I DON’T WANT TO REPEAT any more cliches but I have to tell you this is
really most rewarding work, because people give you back manifold to what
you give them – love, attention. I have worked with other groups
but I never had such satisfaction as now.
I have started working for the children since October 1994. For the first 6 months I was a bit wary because I was not familiar with village setting. So I was a grama karyakarta = village level worker. I used to go to the villages, stay in the homes, visit people, talk to them observe their lifestyle, how they rear their children, etc. After 6 months I felt I can handle a program. Next time after I returned from US I joined as a coordinator.
This is a community based rehabilitation program. We don’t have a set office or set place or set equipment. We travel without equipment from home to home, yard to yard, village to village. We go to each village and introduce ourselves -- myself and about 6-7 people, all local people, young and old, male and female. They have an advantage over me, they are local. Most of them have 10th grade education, sometimes women have only 7th grade education. I trained them in the fundamentals of health, physical therapy, and disabilities and what we can do to bring improvement in the lives of the disabled. We go to each village and talk to the village elders to find out how many disabled children there are.
At first we faced a lot of rejection. “What can you do? If I have a blind child, can we make it see, can we make a deaf child hear, can a child walking on all fours get up and walk and work in the fields?” When we said no, that was it – they said then go away, you are just here to give us useless advice.
It took us a while to believe that whatever we can achieve will amount to something, will be the first step of many steps to come.
If children do not have eyes, they can still use their other senses. A child who cannot speak can still communicate in other way, it is up to the society to receive and understand them. So like this we were able to convince them. Another thing is people wanted instant gratification, though physical therapy, speech therapy, training of mentally retarded people takes a lot of time. No one was willing to give us this time. But, time and patience we have on our side, and with the support of an exemplary organiztion like BCT we slowly started with 13 villages, grew to 40 and now we are up to 50 in three different mandalams.
What we do is: we gather the children and parents. When we go we gather the entire community, not only one family. The whole village has got to be a part of it. This is a community based program so that people can catch on where we leave off. So we involve as many people as possible. We discuss with them what cerebral palsy is, what polio is, how familial deafness results from consanguine marriages. We also show them children who have improved with our help [shows a photo] in one fisher village there was this child who needed a small operation on her knees and elbows which would enable her to use calipers and walk. After 2-3 days, we convinced them and I unfortunately gave a signal to my co worker, “we did it.” They thought I cast an evil eye on the child. The next day she got a fever and the parents said, how dare you come and cast an evil eye on my daughter. So for 6 months I did not go to the village. Slowly things calmed down and the mother noticed other children who were helped by our program, who were going to school, and so she told me, okay, you can help if you are so keen. But this time we did not dare go for operation – we have to proceed so slowly.
I asked her to join the school, she said, I will have to crawl. We said we will get you a vehicle through the government. She said but I am ten, too old. We said that is okay, go ahead and try. I recently went to visit the child. She read a sentence of 18 words. So you can imagine how good we felt, how glad we were to see such an improvement in a child who was afraid even to go out because she crawls on all fours. She is the 7th child of a family where everyone drinks, but now she is going to school like other children. Though she may not learn much she will be in the mainstream.
This is how we work, we approach gently, carefully, we listen to people, sometimes it takes a long time but it still works. We don’t try to fill quotas – numbers mean nothing to me. If one child gets some improvement it is ok. We don’t need 37 calipers, 23 hearing aids, etc.
We explain to them that we are not there to dole out free things, we are facilitators. We give advice, listen and show the way. But what if they want something else? Here is something I wrote a while ago:
For the past 4 years we, the rehabilitation wing of BCT have provided services to disabled folks in these 40 odd villages. We aim to bring awareness about disabilities and ensuing issues among the villagers. Disseminating info, facilitation actions and advocating for their causes is our course of operation. We have to admit that not all families look at us in this light of being simple catalysts of positive change. We think of synergy and they wish for full services. Some people want free services. Slowly we have come to a truce where each of us understands each other’s needs. But people do concede that our job is not that of distributing free services. We also realize that faith hope and charity go together. We have to give something concrete. We cannot simply give advice and wash our hands of it. We have to give some things to those who need and deserve them. We have children who have suffered polio, CP, infantile hemobregia (due to high fevers in first two years) scoliosis (curved back) typhosis (hunchback). These are physically handicapped children. We have tried to get them medical aid from Vizag. Doors have been opened to us through the goodwill BCT has in the community. We have gotten free medical services from hospitals in Vizag, no one has turned us away. There is now not a single child in BCT villages who crawls, all have had surgeries and are walking on crutches, calipers, knee braces.
There are many deaf children in pockets. These are the result of recessive genes from consanguine marriages – marrying cousins and uncles. We tried to set people up with hearing aids, but people do not use them properly. They think of it as a jewel or a possession, which they claim proudly. After 2 years of cajoling and begging people to use them correctly, we have decided to dispense with this unless they are mildly hearing impaired. One interesting case – one girl gave her hearing aid to her elder brother, the genius of the family who was heating it on the stove to get heat. I took it and came back. That was a good lesson for me.
We don’t use much equipment. We realized that in villages we don’t need most of them. So we have to use our brains to figure out what is more convenient, congenial and less alien to people in the villages – so that they do not reject it, misuse it or hide it.
We also started teaching some simple signs so that they can communicate more. Most of the signs are universal – a tree, man, woman, rain, sun -- We add a bit more each time we see them. We all do communicate with hands, that is a part of us.
We also give training so that they can stand on their own two feet. Vocational training: I am sorry to say we have not been able to do much with the blind – we did get them sticks to help with walking but they refused to hold them – they said, our children are not beggars, only beggars take sticks, we are from respectable families. The children therefore can get around in their own village somehow but not beyond. So we gave up on the sticks. At home we teach them numbers, songs, stories, about the world. So a new world is opened up to them. There are many villages, many types of people, so many things happening in the world outside.
For mentally retarded persons, life is much less taxing in the villages than in the cities. They don’t have to learn so much. Whatever they can learn they use. They can raise their animals, work in the fields, if they have a modicum of sense. We also teach them to do household chores to be helpful to the mother/grandmother/caregiver. Mothers and fathers became happy that their children are doing some chores like drawing water, taking cow to pasture, sweeping floor etc. Their exposure to the world is so little in the villages, we need to do more than that.
One friend of mine offered us a computer – I said, if you want just give us money we could do much more, we can buy sewing machines, etc, to teach them how to make a living.
Another part of our program is to give loans to these children as well as adults. They can open a shop, or buy some livestock, etc. I am proud to say that all but two have paid their loans. This is well above the norm, I know this for a fact. These people have been very conscientious and sincere.
We have also formed 26 women (polio, deaf, blind) into a self help group – even though they belong to different villages, once every 3 months, they hold a meeting in BCT, take loans, make decisions on the lending and repayment system. We are proud to say that they are leading us now, we are not leading them anymore. They told us that if we keep the interest let it be 12% if to BCT let it be 6%. We also told them that if they save 10-30 rupees per month and open accounts in SBI they can get 5.5% so they all opened accounts. It is pretty good. It used to be that they depended entirely on their parents. Now they can be independent.
Now our children are going to school. We pestered the government and got scholarships for them. Not much – for the 1st grade Rs. 350, for 8th grade Rs. 800. Government used to promise and never deliver, but we went to their office as many times as possible, praised the officials to high heaven, and got the scholarships. 27 of our children are now getting the scholarships, whereas when we started only 2 were going to school. After 2 years we handed the responsibility over to the parents. Now the parents go to the VA (village admin) and get the signatures, get the job done. We get medical certificates for all the people, which enables them to get their benefits. We also get them railway passes and bus passes – we get them the first two times, then they get them on their own. Even calipers they get on their own.
We showed them that something can be done, life is not futile or useless just because a person is disabled. There is a way, if you have the wish. I can’t say that we have convinced everyone and we still have a long way to go but I do have a hope that some day they will no longer be marginalized and pushed away.
Another thing we do which is a no-no in most of the organised services is we also get involved in their personal life. I know this is a no-no but we have no shame we get involved. If a child is not studying, mother is not paying attention we ask why – if she says husband is beating we don’t stop, we talk to him, we say why are you doing this. We find out what is going on in their lives and see if there is something we can do. This is frowned upon but we have good results. We become part of their lives, we listen to them, even if we don’t do anything they have someone who listens to them who is not judgmental. This is itself a form of therapy.
Two more things – please bear with me. In this program we have achieved a modicum of success, but now the time has come that after 3-4 years of hard work, I also want to start this program in other places. If any of you want me to come with my group for about 3 weeks or so, I can help you to get such a program going. I can come anywhere, free of cost. I think we need such outreach programs. Many of the people have never seen a doctor, but a little medical knowledge can go a long way – we are not going to give injections or anything, but …
We also have to make a critical analysis of man made causes for disabilities. Not only viruses, etc. Indiscriminate use of pesticides and fertilizers are the most damaging cause of birth defects, and this is increasing manifold. People spray these in the fields and then wash their hands for their meal but you can see the dust and signs of these chemicals all over their backs, etc.
Lack of sanitation is a long term problem and also a major cause.
Also, networking with other groups on health, environmental and economic restructuring groups is a must for working with the most marginalized group, the disabled women and children.
We heard a talk in Hyderabad about how environment change can bring back health into villages, it was a wonderful talk. Development and distribution of materials on health, hygiene, environment protection is very useful. Also making caricature and cartoons to put on the village walls would carry the message.
Rather than using technological fixes like medical camps, our focus should be on how to improve the preventive measures. We run so many medical camps but I am sick of them, there is no follow up. You do operations and then you don’t know who treated you. We can get better results if we don’t have to wait for doctors to come and show their “greatness.”
Local groups and local advice, involvement in every state of design, conceptualization and planning the program and conceiving it is so essential.
We found for example that what the villages use for jaundice and some other things is much better than what we use in hospitals. We were forcing them to use medications, but they said, no we use this leaf ... and when we went to the grassroots level and listened and observed, we found that they were right so we decided to seek their advice and they were happy to help.
We train health workers, the medical people who train them – but they keep these people as auxiliaries, the doctor has to tell, these people have to follow. I want these people to take charge. There is a beautiful program in which the disabled people themselves are in charge of their health care program. This is what I want, let them be organisers.
We have three people, one with polio, one with cerebral palsy, and one with blindness, and they are working and earning money in our program as “big brothers and big sisters.” It has been a great success, I am proud to say.
Ravi R: I noticed that the term child does not have an age limit. I was glad to see that. I am wondering about the two cases, one where a child is disabled from birth, and another where one is disabled at a later age. Is the second one more tough, or more like getting them in touch with what they were doing earlier?
Susila: It is easy to train people who are disabled from childhood. For those people who have lost sight, or limb, or any of the senses during their youth or adulthood, it is hard to rehabilitate them because they undergo depression, despair, shame which is very difficult to overcome. They think it is their fault, previous life, etc. They only see it as an indignity. So it is more difficult for us to help them.
Ravi R: Do you have any organisations working for them?
Susila: I am sorry to say I don’t know. I have visited many organisations which help disabled but they do most of the work via institutes where people are treated. That is an excellent question it takes us back to the drawing board. I will have to think about it and try to act upon it.
Kiran: Can you tell us about your technical qualifications?
Susila: I am an audiologist. Beyond that I have
no training in physical therapy or anything, like that but where there
is no tree, even a bush is considered a tree. Because we haven’t
got real occupational therapists, physical therapists, they have to do
with me. I follow the books, pamphlets, etc published by WHO, UNICEF
and other organisations. This whole program is conceived by UNICEF.
They have published lot of books on how to approach and talk to people
– people are people everywhere, language and religion may be different
– but those books have helped me a great deal. I have to read, and
learn and practice. There is also a great guy David Berner in Palo
Alto, who started an association called Health Rights, his books are published
by Hesperian Foundation – they have a series of 5 books, Where There is
no Doctor, How to Train Village Health Workers etc. They are my Bible,
Gita, everything. If I have any doubt whenever I go to California
I consult him and he helps me.
Anshu: I really enjoyed hearing about the satisfactions of working
with those who are physically or mentally challenged. I just want
to elaborate, if I may, from a medical perspective on two points.
1) prevention is more important, maybe not as glorious, but it clearly
goes a long way
2) two of the main causes of the state of being challenged are
nutritional and also nuclear industry – either power or other testing,
creates radioactive isotopes which cause mutation.
Another important thing is folic acid fortification for children and
women, especially prenatal will help a lot as well. The US has added
folic acid to all grains.
Suslia: I read that 20% of maternal deaths in India are due to iron and folic acid deficiency. We work with community services in other areas to spread the message of proper nutrition. We did get into supplementary nutrition for 4 years but we left off, because this gets nowhere just supplying a few eggs and few glasses of milk. Society has to change and adopt new methods. It is not lack of funds.
Ramani announces that Ms. Susila’s paper is available.
How does one break out of that prison? The point is not simply how to change the world, although that too is so very important. One has to learn at the same time to look on and wonder, as a child does, and be sustained by that “purposeless” playfulness in which the spirit impregnates and recreates the forms of matter and which is the essence of pure art.