CAVEAT: I write this post from New York, thus with some distance from the issues I raise. I probably sound harsh to those who try to help handicapped children, but I cannot find forums in which to discuss these thoughts. All questions are interpreted as challenges, and as personal affronts. I once disagreed with one of our teachers about whether a child was retarded (her word), which I didn't think she was. The teacher said, "Then you are saying I have not been a teacher for 30 years!" So in truth, this post is also meant to invite the thoughts of my readers, many of whom have had "too much" personal experience with disabilities. Where I sound harsh, I am feeling frustration. I'm using the Sit and Draw experience to illustrate a problem, but I have only gratitude to my staff and others who helped make this a wonderful day for the children.
From Left: Sonali, Rani, Bornali, Ganga and three of our staff. This is our local park. Our big girls were off in their section for the Sit and Draw.
I love pictures like this because you can't tell which girls are from Shishur Sevay. This is how it should be.
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I never liked when my kids with disabilities, kids who couldn't hold a pencil, would come home from school with finely detailed drawings they could not possibly have done. I happen to treasure the scribbles of my children for whom just holding the crayon is a challenge, and then getting the marking onto the paper -- their own genuine signature, the reflection not of their disabilities but of the effort and determination it takes for them to make their markings -- in their own image, reflections of who they are and what they can do when they struggle. In fact I want one day to produce greeting cards that are really done by them, cards and refrigerator art that is genuinely theirs.
Does it matter? I believe it does. I think it has something to do with self, and identity, and what is real and what is fake. I am committed to understanding how these children feel, how they experience the world around them, when they cannot speak in words. What is life like for them? I want to know and then I want them to know I know. What is it like to be Sonali, Rani, Bornali, or Ganga?
Sit and Draw is ingrained in the cultural life here. Drawing is taken very seriously. On this day we had Sit and Draw in the morning, then Quiz program in the afternoon and dance performances in the evening. Shishur Sevay girls took part in all of these.
This is Ganga, our most expressive. When she came three years ago she could not use any of her limbs or hold her head up. She was totally limp. Only her eyes spoke. I used to hold her and just follow her eyes, carry her where she wanted to go, which was usually upstairs to the classroom with the big girls. Sometimes at night she would wake up crying, and I would follow her eyes, taking me outside into the night... so I had to also teach her that just because I KNEW what she wanted didn't mean she was going to GET what she wanted. Night was for sleeping.
Ganga loves to draw.
The orange is too faint to see in the picture, but this is her typical pose for drawing. I was working with her so she got to do it herself.
Here is Bornali. She is getting help. I think in her mind it's, "Someone is helping me, paying attention to me. This is good." She can't tell us enough yet. Sometimes I look in her eyes and imagine one day her giving me feedback on everything I've said and done -- what has really been going on as she has been getting by by going along.
One day a teacher was working with her with a puzzle with pegs so she could lift the pieces. The teacher wanted her to pick up the piece with her and. But when the teacher glanced away, Bornali proudly grabbed it with her teeth and held it up! She was so proud of herself. I was too. She analyzed the task as picking up the piece, not using her hand to do it.
It's a house. Is it hers? Does it matter? I wonder.
But, back to Ganga. She is working.
I KNOW those markings.... that's Ganga's handwriting.
Ganga is going back over part of what she has done.
Sonali is "drawing" a landscape. Sonali is visually impaired. She sees light, and forms if they are close. She holds things up to the corner of her left eye and then tries to touch it with her tongue.
"Visually impaired" is apparently a very political term here because I have been scolded more than once for using it. The medical people -- doctors -- agree but the special educators tell me she does not have a problem. We just haven't taught her how to see. She has brain damage, and she finds her way around by touch and uses her hand to explore the face of anyone holding her. This is irrelevant. India has not been left out the almost universal answer to all childrens' problems -- blame the mother.
I wonder what she thinks she is looking at.
Rani is bored and is taking a nap. She knows this is not her work because if it were, it would be crumbled, and have some spit and bite marks -- her signature.
But now, something has happened with Ganga. Ganga had "finished" her picture. She put down her crayons and did not want any more crayons and did not want to do more. I asked her if she wanted to do more and she shook her head no. She can tell us yes and know. That's a wonderful basis for language and communication. Her "yes" is always clear. But her "no" is sometimes a tease to us. She jokes with us. She is a thinker.
An onlooker came and decided to help her. She did not understand that Ganga had finished HER drawing. I'm showing these picture's because they best describe a struggle I've had all along to let the children help themselves, value what they really do, accept them as they are. Ganga's eyes tell it all.
This is just a fun morning in the park, but this is also what I found in the schools for handicapped. I would get reports of what the children could do: "Can draw a circle" really meant could fill in space in a stencil of a circle if someone holds her hand and the pencil. That may be an activity but it is not a skill.
Meanwhile the big girls worked on their drawings, some of them probably wishing for some help. They are self-conscious. They have been accepted at times, insulted at other times. Our participation in this whole day of festivities was last minute and the result of much miscommunication. We had not been invited for the past two years. Then the day before I received an invitation, but too late for us to participate in the sports event.
The girls apparently knew of these events but assumed they were not invited because they are orphans. As usual, I was clueless because no one even told me about the events. One of our staff has a son who was participating but she also didn't tell me. This is the culture about which I always complain. No one tells me, and because I don't have the language, I don't know what is going on. (For those who want to instruct me that I must learn Bengali I can only say, it's too late; I'm too old; if I could I would.) I told the girls they were wrong and that it was because of me, because I has stopped paying protection money and we had not been invited since then. I told them it was a problem of having a white mother.
The next day I brought along a translator and confronted the Club President. After a fiery exchange, we agreed it was all a miscommunication because they thought I knew and they thought I was now with another Club so their feelings were hurt. The result was really wonderful assistance because I was able to make clear that no one tells me what is going on, that yes, my staff and others should have told me, but they didn't, and don't, so the club people have to tell me. When we showed up for the Sit and Draw, and I couldn't even figure out which table was registration, the young men really helped, sweetly and genuinely. But yes, I was basically alone in terms of anyone who spoke English and could help. The girls and I are often alone. It also brings us closer to each other.
A puppy comes to visit.
Treats are given out after contestants hand in their drawings. The bag has an assortment of sweets. Bornali is especially happy to receive hers and she reaches out to shake hands.
When it is all over, the girls and I pose for a picture.
Later in the afternoon six of the girls came back to the park for the Quiz program. This was ignorance on my part because the competition was high school students, college students, adults... but my girls braved it out. Next year we will skip this part.
Evening... dance.. Thinking we would be pleased, the announcer over and over again referred to the Shishur Sevay Orphans! The girls hated it, me too. It comes with the territory. I don't think it helped with the judges though. The girls danced very well but the prizes went to the students of the private dance schools. We weren't out-danced, but we were out-costumed.
And then the little ones were called up for their special awards for participation in Sit and Draw. Each younger girl was carried up by a didi to receive her award. It was beautiful.
You see, the medal was originally placed around the neck of a big sister but she insisted it was for Sonali and asked the man to take it off and put it around Sonali.
The four little ones with four big sisters, always proud -- so it's not about the art on this day. I know that didn't matter. But it is a celebration of acceptance, a recognition of common needs, a shared sense of what it means to be members of a community.
Since I write this post from NY, I write also that I miss my children in India. I've been on the phone with them several times already. "How are you?", "I'm fine. You fine?" With the handicapped, I spell their names on the phone and they recognize that: G A N G A... Ganga!!! and she laughs. B O N O Bono!!! and she laughs.
By personality I'm someone who would prefer to have everyone I love close by, all together, in one city, country, continent. It's funny, that's all. I'm a very lucky mom, a very lucky human being.
I think that is a good piece of humanity and I salute them. Really very good step for society.
Posted by: School Admission Mumbai | 28 December 2012 at 01:13 PM