26 May, 2024

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Define Your Terms, Please

By Sandra Fernando

Sandra Fernando

Cabinet approval has been granted to draft a new Bill on the Protection of the Rights of Persons with Disabilities.” This is the opening line of an article on a popular web based newspaper today, 15th March, 2023. How wonderful that this is happening at all! And yet…

How do we define “disabilities”?

In Sri Lanka, a very conservative society where appearances matter more than almost anything else, the term “disabilities” has had a rough ride. At one time, if a family had a child with Downs’ Syndrome, they would hide the child or fob him/her off somewhere else so they wouldn’t have to be embarrassed by the tyke. Well, that’s changed. There are more and more places one can apply to for support with a child with Downs’ Syndrome. People don’t stare as much anymore. At least, it seems to me that people don’t stare as much anymore. Perhaps it’s just that I don’t stare as much anymore, given that I find one or two of them to be positively engaging and fun to be around. They don’t live as long as the rest of us and you can see the steel commitment of their families, like a shadow around their eyes. They seem to have the attitude that, “I Will look after my son/daughter/brother/sister regardless of what anyone thinks.” I wish they didn’t have to grasp with such determination at an attitude that is clearly still a minority attitude in Sri Lanka.

And then there are the ones with physical handicaps. These we see going around with walking sticks and walkers or in wheelchairs. These are the ones with prosthetic limbs, or dark glasses covering up false eyes or missing eyes. Once, I bought some poppies and poppy wreaths from a table at the Book Fair at the BMICH. The two lads behind the table were very young – somewhere around 20 at best. I couldn’t figure out why such cute kids were in charge of this table. Then I saw the hearing aids in their ears. They had been caught in land mine explosions and would pay the price for that for the rest of their lives. I wonder if anyone remembers the Independence Day parade in the ‘90’s when Chandrika was president. The last squad in this parade was a group of wheelchair bound men in uniform. There were a few men in dark glasses with white canes as well. Chandrika stood up for them and put her hands together in tribute to them. Some years later, we heard stories of guest houses manned by LTTE soldiers, men and women who had lost limbs but could still work. We also heard stories of how a soldier would come home after rehab minus a limb and his wife would leave him. There are others with worse physical handicaps as a consequence of the war and accidents. All these people need the support of the state and of society. 

The area in which they need the most support is the area of society. Again, in the ‘90’s, I was on my way to work one morning when a man with one arm got on the bus. Not one yako got up to give him a seat. The conductor went right up to him and shouted for his fare into his face. The bus was speeding through traffic, the guy was holding on for dear life and the conductor was yelling at him for his money. I was standing myself, so I had no seat to give him. This is an example of the kind of thing that we must not do to our vulnerable ones.

But Downs’ Syndrome and physical handicaps are visible and physical. What about the others? The invisible handicaps? What about the autistic, the schizophrenic, the bi-polar, the manic depressive? I’m so tired of hearing people say of such a one, “He’s a little slow.” Damn it, he or she has a specific condition with a specific name and a specific approach that we could take. Give the condition the dignity of its name and the one who has it becomes a person. A person with needs that we can begin to fathom and respond to. 

Or ignore if we like. I went to university in Canada in the late ‘70’s. One of my classmates was a Czech refugee who had lost his eyesight in an accident. He lived off campus and couldn’t hold down a room. The owners would tell him that he was a liability, in case of fire or an accident, so they didn’t want him around. I remembered that story earlier this month when I heard how a group of children from a particular school in the Colombo area were told that one kid couldn’t use a public pool. He is autistic, you see. He’s handicapped, the non-handicapped kids could use the pool, but this chap had to sit and watch from the side. The owner of the school was so offended by this cruel attitude that she built a pool on the land on which the school is situated and hired a swimming teacher. “Now,” she told me, “everybody can use the pool without a problem.” 

That is the kind of attitude we need to have here: inclusive. We need to develop inclusivity as a priority. 

If I sound like I’m taking this personally, it’s because I am. I have a brother who has not been mainstream most of his life. I worked in a school that mainstreamed kids with mild cases of autism, but my father wouldn’t try to start over with my brother when I brought the idea home. I had to wait till both our parents were dead to have him tested. The test confirmed that he had been an undiagnosed case of autism all his life. Our father had been able to arrange with a classmate of his to create a job for my brother in the company that he owned. He was due to retire in the year that both our parents died, so I looked for a place that would take him in and found a day care centre that specialises in handicapped men. There is no other such place in the world that I am aware of. How wonderful that Sri Lanka has such a place.

One day, as I came home, the lady from across the road came over to find out where it was that my brother was going daily. She knew he was retired, but he was still going out daily. And going out quite happily, I might add. I told her about his condition and the place. She wanted to know if her son could also go there. I asked what his condition was and she said that he is a slow learner. So I gave her the steps in the process that she would have to go through to have him accepted by the place. She never raised the subject again. That lady is dead now. Her son and I get on with each other and he told me that he has schizophrenia. Then he showed me his diagnosis card. If only his mother had been up front with me! What is there to hide? Why do people feel such shame when a member of the family is clearly afflicted? Their shame is such a high tower, isolating the individual from the possibility of working with his/her condition.

Would you like to know how many there are with invisible handicaps in Sri Lanka? So would I. The lady who tested my brother had done her Master’s on autism in Sri Lanka and discovered that the incidence is something like 1 in 93. Let’s make the Maths easy and call it 1 in 100. Assume a population of 22 million (to make the Maths easy). One in a hundred in a population of 22,000,000 works out to 220,000. That’s just the people who are autistic. The majority of them were never diagnosed. We don’t know who they are or where they are or how they live. Each one of them will have at least 1 caregiver. That makes a figure of 440,000. Almost all of them are voters in a voting population of something like 15 million. What about the schizophrenic, the bi-polar, the manic depressive and so on? It is not a small population of people who need support and inclusion. 

It wouldn’t be hard at all to find them and develop a database of them. The Ministry of Health has a system of midwives who are the front line of defence in Sri Lanka’s health system. They go out into distant places, poor places, villages, hamlets – everywhere – and they know the names of householders, mothers, children, babies – everyone. They supply data on infant malnutrition, using weight as an indicator. We have known where the polio victims were located through their reports. They have been trained to look for signs of specific diseases and report them to the nearest hospital from time to time. They just need a little training to recognise the symptoms of autism or schizophrenia or whatever and they could report possible cases to the nearest hospital with a psychologist or psychiatrist for follow up or, at the very least, testing.  In 18-24 months we could have a detailed database of people with invisible handicaps in the country. It wouldn’t be hard to do and it would cost almost nothing to get the data. We would have a much clearer picture of our population with invisible handicaps. We could then make intelligent and informed decisions about developing a kinder and more inclusive society. Isn’t that what we want? 

So Mr. President and Honourable Members of Parliament: please, please, please develop your legislation to include the people with invisible handicaps. 

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Latest comments

  • 2
    0

    So kind and thoughtful, Sandra.

  • 1
    0

    Thanks, Sandra Fernando, for a sensitively written article.
    .
    I’m not sure that I will go further into the issues raised here, but we must at the very least be kind and considerate to handicapped people.
    .
    I have deliberately said “handicapped” instead of going for euphemisms. We have all come across people who cannot live normal lives – we have to be kind to them.
    .
    Our society is set to get poorer by the day. However, what can we expect from rulers whose sole intention seems to be to suppress all rights and freedoms?
    .
    Panini Edirisinhe

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