by Hilary Crowley

Introduction:

SAMUHA is a mostly rural integrated development organization. It runs health, education, dry land horticulture, sanitation, HIV/AIDS, community organization, thrift and slum programs as well as the disability program, which we are involved in. SAMUHA is a Sanskrit word meaning society/community. The head office is situated in Bangalore but most of the programs are run out of rural areas in the State of Karnataka in South India. The disability program runs out of 3 different geographical locations. Two of them are in very dry inland areas on the Deccan plateau, where the soil is predominantly red and the landscape is very rocky. The monsoon rains are sparse and there is usually a drought every three years, when many of the villagers have to migrate from their village to find work. The third location is closer to the coast in the Western Ghats on the edge of the forest. All of these rural programs work with the poorest of the poor.

Malnutrition is widespread. The majority of villagers live in huts of both mud and straw or of stone. The extended family often lives together, the girl moving in with her husband’s family. Most of the rural population is agriculturalist. Some have their own land and others work for a land-owner. It is common for the livestock to live in part of the house with the family. Many Indians are vegetarian, especially the Brahmin Caste. Moslems eat meat but not pork. Hindus do not eat beef. The most common meat is mutton or chicken. The staple food in the villages is roti, made from millet, and lentils or beans. All meals are highly spiced, way more than we are used to in Indian restaurants in Canada.

6% of India’s GDP is spent on health care.

Life expectancy for India is 60 but is less in these villages

Infant mortality rate is 85/1000 births in the villages

Family planning is encouraged and financial incentives are given to families who only have one or two children.

Population is over 1,000,000,000.

There is a huge difference between health care in the cities compared to in the rural areas. There are specialty hospitals in the cities such as neurological institutes and orthopaedic hospitals. Even these hospitals are bare-boned and the family is expected to provide the meals, do the laundry and provide personal care for the patient. We hear of deluxe western style hospitals but I never saw any of these. The doctors in the city hospitals seem very competent. In the rural areas, there are primary health care centers that are government run small hospitals, but the ones I saw were pitiful. Villagers can barely afford the x-rays, medications and other necessities but they are expected to pay and everyone wants a bribe. Some of the city hospitals are private and some are government run but there is always a cost to the patient. The families of children with polio are charged for the corrective surgeries which is a deterrent to treatment. There is basically no security safety net hence the need for non-government organizations.

Officially the national disability rate is 2% but there is a strict criterion for this; one must have at least 2 limbs that are impaired to be considered disabled. We believe that the disability rate in the villages is closer to 5%. The main cause of disability is still polio but as the incidence for this is getting less, we are seeing more children with developmental delay from a variety of causes. Blindness is common, often due to vitamin A deficiency. Hearing loss is also common. Interestingly there seems to be an unusually high incidence of rickets and of osteogenesis imperfecta. There is also a variety of congenital abnormalities. We are now seeing adults as well as children and in the last year we saw 6 clients with spinal cord injuries. Amputation is increasing in numbers as the incidence of diabetes increases.

The issues for people with disabilities are many and various. Village streets are rough and rocky and totally unsuitable for wheel-chairs. Entrances to houses always have at least one step and a high lintel. The suggestions to modify these impediments are met with resistance as the belief is that these features keep the evil spirits out of the home. People with disabilities are often shunned by the villages and by the schools. None of the homes or schools have running water or toilets so everyone goes to the field or down the street to relieve themselves, further compromising those with disabilities.

There are several physiotherapy schools in India but they are highly trained in the use of modalities and graduates all choose to either stay in the cities or to work abroad. It is not possible to recruit Indian PTs to the villages. Instead of this there is a large network of community based rehabilitation (CBR) workers. Recently the Indian Rehabilitation Act has passed and now all CBR workers have to be certified. This has standardized the skills of the CBR workers and ensures that a certain level of competency must be achieved. All therapy services in rural areas are provided by these village trained CBR workers or else by foreign trained volunteer therapists.

I originally went to India to work with SAMUHA as a rehabilitation trainer and to develop the CBR program from 1994-1995. I went with Action Health, a British organization that sent health professionals overseas. I paid my own airfare. SAMUHA provided simple accommodation and food and I was paid a monthly stipend that covered my expenses and Action Health paid the equivalent of my airfare over the period of a year. They provided me with a week’s training prior to departure and visited once during the year. I trained 12 village people in basic anatomy, etiology of polio, therapy, gait-training and etiology of CP, differential diagnosis, normal development, assessment and interventions. There was an orthotic workshop where a local man had received a year’s training in making braces in Bangalore.

We traveled to the villages 4 days a week to give home-based therapy and to teach the family. On Fridays we held assessment clinics for new children. Every Saturday saw a full day of training and Sundays were sometimes free and sometimes involved putting on awareness programs in the villages to teach the importance of vaccination and of education. This was done through song, puppet shows and street theatre. Our day often started at 6am and finished at 8pm usually with a break from 12 noon to 4pm. Most of the therapy was home based in villages within a 60km radius of the center. We traveled by motor-bike or scooter. For the first 6 months I had an interpreter with me all the time who had also developed the program to that point. He left to further his studies after 6 months and I took on his role as project leader as well as trainer. By this time the original staff had learnt sufficient English that we could communicate and I just had an interpreter for the teaching sessions. Language was sometimes a challenge and towards the end of my time there, I was getting seriously bored with plain rice and HOT stewed vegetables. I lost 20lbs and was quite anaemic. Apart from that I thrived on the experience and was very sad to leave.  I have been returning to the project every year for about 6 weeks to offer further training. I do this on my own time and at my expense.

The most challenging part of the work is having to diagnose children that have never been seen by a real doctor, often with complex disorders. The most positive part is the dedication and enthusiasm of the disability workers and their eagerness to learn. I believe that they are now experts in recognizing and treating polio. Their skills with CP are rudimentary but evolving. As we see new conditions, I give extra training sessions eg: spinal cord injuries, diabetes. The number of disability workers is now 29 and there are 3 orthotic workshops with 3 technicians spread over 3 locations. They are also now making prostheses and ear moulds for hearing aids. SAMUHA has been chosen as a site for the certification exams and the training notes that we developed have been incorporated in to the standardized curriculum. This shows SAMUHA’s disability program is respected and recognized for its high quality.

In 1996 I started a non-profit society here in Prince George, BC called Samuha Overseas Development Association (SODA) to fund-raise for the disability program. In 2001 we received charitable status and I now take Canadian PT and OT students in their final year for 6 week practicums. This has proved a very successful initiative in that the students learn new skills and they also have initiated special projects.  For example, last year the student made pressure relieving cushions for spinal cord injury clients out of partially inflated cycle tubes. An OT student devised a dosette box out of match boxes with pictures of the moon and sun denoting times of day to enable families of mentally ill clients to correctly administer their pills. This way the disability workers learn new ideas and skills and the clients benefit. The students are also involved in at least one day’s teaching for the disability workers.

Recommendations:

For students interested in the practicums, there is an application process.  Contact SODA for application forms, core objectives and information package. So far we have taken OT and PT students from UBC and U of A. We go in either Nov./Dec or Jan/Feb depending on university calendar. The climate is best during these months as it gets very hot in April, May, around 45degrees. The monsoon usually starts in June. I go as the supervisor and I prefer not to go July-Sept. Students are responsible for their air-fares but SAMUHA provides simple food and accommodation.