An article in the Mint Lounge, a movie and a few conversations are the inspiration for this blog.
The article was titled, ‘Unpacking the labels’, by Sonali Gupta. The movie was, ‘No Letting Go’, a multi-award winning movie. I will refer to the ‘conversations’ a little later.
Let me start with the article and I am quoting a few sentences that were thought provoking. (Without the context)
• “Tell me; is the ‘identity’ of these clients just their diagnosis?”
• “Labelling was reducing people’s sense of self to the mental health concern they were trying to deal with. We become the labels that are put on us.”
• “When we look at people with the so-called labels, we end up collecting evidence that fits the label rather than seeing people as they are.”
These statements can be explained with one statement from the movie — a statement made by the therapist who corrects Kyle, Tim’s older brother, when he says, ‘Tim is bipolar’.
She replies with, ‘Tim is not bipolar, Tim has a bipolar disorder’.
The therapist was separating the identity of the person from the diagnosis.
‘Tim is bipolar’ is a label, thus reducing him to the label. All the evidence collected would then be added to fit the label, forgetting that there was so much more to Tim than the symptoms and behaviour of the bipolar disorder.
S/he is ‘dyslexic’ — that is a label.
S/he has dyslexia — this separates the person from the __________. I am not sure what I should fill in the blank. Should I say, ‘disability’ for after all, other terms commonly used for dyslexia are, ‘learning disability’ or ‘Specific Learning disability’ or ‘Specific Learning difficulty’? I think I would like to fill in the blank with ‘condition’ or perhaps ‘difficulty’ would be more accurate.
Talking about dyslexia, in my mind it is possibly the most misunderstood among difficulties, disorders, disabilities or challenges. Do you see, how difficult it is to put a name to it, as each of these terms stress on what is lacking and not on the person. It is all about semantics.
Yes, dyslexia is the most misunderstood as there are no outward signs or indications of the condition that the child / adolescent / adult is facing. What I mean is that one can see a physical difficulty or a mental challenge or if a person is hearing impaired and so no — but not dyslexia.
A case-study of ‘Z’
I chose Z as it is the last letter in the Alphabet.
Z was in the Nursery. His teacher called the parents a few months into the academic year, to say that he was not able to recognize the letters of the Alphabet and asked them to work with him at home. That was the first of many meetings through the years of being called to school.
The parents did work with him; however they did not worry too much, thinking that he will pick up at his own pace. As Z went on to LKG and UKG he continued to fall back — he did not get the sounds of letters and could not read 3 letter words. There were mirror images and reversals both in reading and writing. There were a few new found ones — for e.g. p, t, v were all ‘e’ and he would often ask which ‘e’?
As he went on from class to class, his reading was slow, he would repeat lines or miss a line, guess at words and Oh My! The spelling errors!
Z once said to the special educator, ‘I feel jealous of those who can read’.
Life at school and at home became hell as it was now all about hours and hours of tiring studying.
Z spoke intelligently but performed badly and hence got labelled as lazy, slow, disobedient — this despite putting in more hours of work than other children. The parents were quite tired of being called to school to hear complaints as Z now had behavioural problems too like acting the clown of the class. The mother pleaded, ‘Please help me, I cannot be called to school one more time.’
A traumatized family with a traumatized and demoralised child with low self-esteem and low self-confidence.
So what is dyslexia? The word comes from the Greek language and its translation is ‘dys’ — difficulty, ‘lexis’- words. Hence difficulty with words — i.e., spelling, reading and writing and sometimes Mathematics.
They are slow despite normal or superior intelligence.
They can get mixed up with a sense of time, directions of left and right can be puzzling.
A teacher brought her son to me on a day that he had been slapped by the chemistry teacher. A diagram was marked wrong but the boy insisted it was correct. The teacher in anger at his stubborn insistence slapped him, but apologised to the mother, who was a fellow teacher. I told the mother to go home and look at the diagram in the mirror. To her astonishment it was a mirror image.
The boy drew it the way his brain played it back to him. (Perception)
Another child — about 13 years old said she associated the letter b and d with her watch hand, watch hand — palm down was letter d.
I can go on with examples.
When a child appears to have a learning problem — please do not label the child as lazy, good for nothing — it would be good to have the child assessed for specific learning difficulties.
And then will start remedial work which is tailor-made for each child. No two children’s condition is alike.
What it needs from you and me is awareness of the condition, understanding, empathy and definitely no labels.
These children are creative, talented — and can be productive in areas that are their strengths.
Important is the word attitude — Attitude of the child towards the condition and attitudes of parents, siblings, relatives, peer group, teachers towards the child.
What about the conversations I mentioned at the beginning — these conversations were with:
• A friend who has gradually lost her sight.
• A student who got in touch with me after about 2 decades — who in the last seven months has had covid, and came back from the jaws of death. Subsequently suffered a stroke and has lost her sight.
• Another student who suffers from debilitating rheumatoid arthritis.
What is amazing about each of them is the acceptance of the condition — no bitterness, no anger but the zest to move on with life with calm and faith.
And then I had a conversation with Deepika, my daughter-in-law, about these beautiful people. And she said, ‘Aren’t we all on the spectrum of some disability throughout our lives.’
Come to think of it — isn’t it true? It could be due to illness, accidents, age and other environmental factors.
So what is your disability?
The point I am trying to make is simple — what right do I have to look down on, tease, bully, humiliate, or even to feel pity.
If not now, at some time I am going to be on that spectrum of disability.
And did you know that apart from Developmental Dyslexia there is something known as ‘Acquired’ Dyslexia? These are individuals who have lost their capacity to read and write due to environmental or other factors.
Let me conclude with the words of the Therapist in the movie:
‘Y’all can’t do this alone, It is a family effort.’
Family is me, you and all.