Taking Care of Our Health
Among workers of the informal economy, or the self-employed, as we call them at the Self Employed Women's Association (SEWA), women are the poorest and most vulnerable. In fact, 94% of the women's workforce in India ekes out a living in the informal economy. Their 'double' and even 'triple' burdens are well-known and well-documented. Very active both within and outside their homes, women workers are slowly gaining visibility. But unfortunately, they still remain largely unrecognised and their very significant economic contribution is yet to be fully acknowledged. And what we have learned at SEWA over the past three decades is that work is central to them and hence their main priority. As Kamlaben, bidi roller and SEWA's Executive Committee member puts it : "As long as we work, we live." Another commonly heard refrain is: "We work for our stomachs."
Self-Employed Women's Association (SEWA)
SEWA is a union of 250,000 women workers of the informal economy. It was founded in 1972 by Ela Bhatt, a lawyer and trade unionist. Today SEWA has grown to include a Bank with 130,000 depositors and more than 80 cooperatives of various kinds, all owned and managed by women themselves. SEWA members are:
Unfortunately their work is often at the cost of their health. In fact, our studies show that poor health or illness is the number one stress event in their lives. Sickness not only causes tremendous suffering but also significant economic losses and erosion of their asset base. Sickness and health expenditure keeps women and their families in poverty. And at the same time they need to be healthy and strong to work, and earn. Given this context, let us first examine the health scenario in India: what have been some of the achievements and shortfalls, and where are we headed.
Our Health - A Brief Overview
Infant Mortality Rate or IMR is universally acknowledged as one of the best indicators of the health of a nation. Over the past fifty three years since Independence, we have halved our IMR to 72 per 1000 live births today. It is undoubtedly a significant achievement. And yet there is tremendous variation in IMR in India.
There are a handful of states - Bihar, Madhya Pradesh, Uttar Pradesh, Rajasthan and Orissa - where IMR is still near 100 per 1000 live births and others like Goa, Kerala, Tamilnadu and Mizoram where IMR is less than 50.Kerala's IMR of 16 per 1000 live births is now an off-quoted example of what one state can achieve when health, education and other social programmes are rigorously pursued.
In our own health work at SEWA in our home state of Gujarat, we have found tremendous inter-and intra-district variations in IMR. Even within the same district, there are blocks (administrative units) with high IMR as compared to the adjacent one. And similarly we have districts like Banaskantha with IMR near 100 per 1000 and others with half that amount.
Another interesting aspect regarding IMR is that the economically most advanced and industrialised states of India, Maharashtra, Gujarat, Punjab Haryana and Andhra Pradesh have average IMRs, with the possible exception of Maharashtra. In any case, they are not among the top rankers vis-à-vis IMR. Many explanations are offered for this including insufficient health and other social expenditure, low status of women and others.
As in the case of IMR, significant strides have been made in increasing life expectancy, birth rate and total fertility rate. (see box below)
And yet maternal mortality ratio rates (MMR) remain high at an average of 500 maternal deaths per 100,000 live births. This is an aggregate figure, masking regional and urban-rural divides. But field studies have put the figure as high as 800 per 100,000 live births in rural areas. In any case, India has one of the highest MMRs in the world.
Most births in India occur at home, and are attended to by village midwives or 'dais'. Our own studies show that eight percent of our members have births attended to by 'dais'. In Ahmedabad city, India's seventh largest, at least a third of all child births are attended to by dais2 . These experienced women work night and day in the most difficult of circumstances and terrain, and with a commitment that is hard to match. But for a whole series of reasons, including delayed referral of obstetric emergencies, lack of transport and poor back-up services, little dent has been made in India's MMR.
On the positive front, another achievement is the widespread knowledge on family planning. Recent data from several states, including the poorest ones, and our own studies show that most poor women know about contraception and the methods available 3. They may not have knowledge about correct use of these and their side effects, however. And very few fully understand or know about their own and men's reproductive physiology. They also know little about preventive health and are eager to learn of simple ways to stay healthy and save lives.
Yet another aspect of India's current health scenario is the lack of access to health services. This is a whole discussion in and of itself. But in brief, this gap between the need for health care and the actual services is largely because city-based health professionals, doctors, nurses and paramedics, do not provide their services in areas where the poorest and sickest live - in the villages and even poor, urban neighbourhoods. There is a government health system with primary health centres like clinics but their functioning is very mixed. And again, the lowest level of services or even none at all are available in the poorest and neediest of areas.
When these services do reach people, women in particular, often speak of lack of sensitivity and non-availability of the care that they truly require. Because our system has been so much focussed on reducing fertility and promoting family planning through a targeted approach till recently, they have neglected issues such as infertility. Even the major communicable diseases, like tuberculosis, have not got the attention they require for control and eventual elimination.
For poor women, waiting in long lines for medical care for a doctor to appear in a government primary health centre or hospital has an economic cost: of time and thus daily wages or earnings lost. They have no sick leave. Hence, the overwhelming majority prefer to use services of private doctors. In SEWA's own studies, 80 per cent of the women said they go to private practitioners4. The main reasons for this are time saved and their belief that private doctors provide quality services. But such services have a hefty price-tag: three to five times the cost of services at government facilities.
The high and rising cost of health care is another aspect of the current health scenario in India. The main costs are for consultancy and for medicines. The latter, in particular, have increased markedly after the Indian government liberalized its drug policy. Where 200 essential drugs were under tight government price control, these have been reduced to 70. In practical terms, decontrol has meant increase in prices which hit the poor hard. Take the case of anti-tuberculosis drugs. The cost of these rose three times in a single year and now a days worth of medicines equals the average daily income of a worker in the informal economy.
Also, with liberalisation we have opened the doors to all sorts of formulations some useful, most not - from overseas. We have moved far indeed from WHO's essential drug list of 300, with over 40,000 drug formulations crowding up our markets. Our members, often illiterate women and in any case unable to read the English drug labels, buy a battery of pills and tonics of questionable utility. This is yet another drain on their precious resources and income.
Improving Our Health - What Can Be Done?
Fortunately, the health sector in India is one of the most vibrant, in terms of examples of constructive alternative health action. There are several successful examples of significant improvements in health status through local action. Some such as the Jamkhed barefoot doctors programme are known world-wide.
At SEWA too we have been working for improving our members health or what we call health security. We have learned that unless the health of women and their families is strengthened and improved, our members can never achieve their goals of full employment and self reliance.
SEWA's health approach is firmly grounded in its philosophy of addressing the needs of women holistically. Thus economic empowerment, organising and health promotion are undertaken in an integrated manner. We believed from the start that women themselves must take care of their own health and that of their families. Since 1985, SEWA has identified and trained health workers from within its own membership. With intensive training and backup support, SEWA's team of 200 midwives and health workers serve as health educators-cum-barefoot doctors for 75,000 women workers.
SEWA's Approach to Health Security: Key Elements |
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The main health activities are:
- Health promotion and preventive health care through health education, immunization, micronutrient supplementation, involvement in water and sanitation activities, and family planning
- Curative care through rational drug therapy and referrals, especially including tuberculosis care
- Occupational health care including provision of protective equipment such as sickles for agricultural workers to reduce body strain.
- Promotion of low-cost traditional medicine treatment and local herbs, massage and acupressure
- Sale of low cost, rational drugs through 3 shops and 50 health centres
SEWA's midwives and health workers have formed their own cooperative which they have been running for the past ten years. The first of its kind in Gujarat state, it has an annual turn-over of 10 million Indian rupees. The cooperative is run by elected representatives of the shareholders, the midwives and health workers themselves. Three other such cooperatives have been promoted based on this experience, and are similarly developing their health activities and moving towards overall sustainability (both in financial terms and with respect to autonomous decision making and management). In this way, SEWA is increasing the leadership and visibility of the poorest women in both health and other spheres.
Another important impact of SEWA's health work is that it has served to knit together various castes and communities, hitherto divided by age-old traditions. Most of the health workers and midwives are from the most disadvantaged communities, especially the Harijan community. The health activities have given them a new status in their villages, and despite initial resistance, today all castes and communities seek care from them. They have become leaders, not only as health workers but also of other economic activities like savings groups and as elected representatives in their village councils.
Important linkages between local women, their organisation SEWA and / or their health cooperative, and the government and private health systems have been forged. One example is a joint collaboration between the government and SEWA for the regular diagnosis and screening for reproductive health problems in women of remote, inaccessible villages. This is organised by SEWA with the help of both private and government doctors.
The cornerstone of all SEWA's health activities is the improvement of women's health status. The emphasis is on initiating a number of health activities based on local women's needs. While the "entry point" is women's health the entire family's health is safeguarded.
In order to undertake bottom-up planning of all our health activities, workers themselves have been involved in conducting a base line survey which has provided district wise data so that women can plan for their own health promotion. Planning itself is annually undertaken by a team of village based women leaders who also monitor all activities every month. These women also bring their grass root health experiences to the attention of policy makers and planners. Recently, Nanduben, a village midwife, sat on an expert panel at the World Health Organizaiont's international health promotion conference in Mexico. She eloquently suggested that the local women were ready to take responsibility for health promotion in their villages.
Impact and Outreach | |||
60 health workers and 140 midwives in 100 villages and 9 districts of Gujarat state have been able to achieve the following: | |||
1. Health education through regular training | |||
10,749 women | 1,010 men | ||
2. Curative care through Health centres | |||
49,569 women | 40,213 men | 27,130 children | |
3. Curative care through Diagnostic camps | |||
5,219 women | 1,074 men | 3,977 children | |
4. Sale of low cost Rational drugs | |||
5,787,614 women | |||
5. T.B. Care (Curative) | |||
871 women | 704 men | 231 children | |
6. Immunization In collaboration with government | |||
3,357 women | 29,400 children | ||
Contribution to health policy
- Worked actively with government, other women's groups and health organisations to bring in a new "target free" approach to family planning.
- Founder member of "Health Watch" an Indian organisation committed to the Cairo Conference's "Platform for Action", (developed at the International Conference on Population and Development ) and to collaborating with and monitoring the Indian government's adherence to the same.
- Member of the Global Commission for Women's Health of the WHO, pressing for a comprehensive women's health approach
- Active member of the National Commission on Self Employed Women Workers, including member of the health task force
- Member of the national advisory group of Reproductive and Child Health (RCH)
- Initiated a campaign, for greater recognition and involvement of dais in RCH, including identity cards for them and remuneration making Gujarat state the first in India to give such recognition to dais.
- Initiated mobile health care dispensaries with government for workers in remote villages, especially for salt workers in the desert regions.
- Actively involved in slum upgradations programmes, collaborating with government to bring water, sanitation, toilets, electricity and other basic amenities to the poorest of urban and rural communities.
Improving our health: What works and what doesn't
From SEWA's experiences of women-led health action at the local level in villages and urban neighbourhoods, we have learned much. Our experiences include what worked for our members and their families, and what didn't. Both are shared here in the hope that these will be useful to others in India and elsewhere.
1. A Holistic Approach
As mentioned earlier, work security and social security are inter-linked and inter-connected. A productive work life requires access to health care, child care, and other elements of social security. Access to health care and other social security benefits can be availed of only when women have work and thereby income and purchasing power. In Kheda district through SEWA's union action, agricultural labourers and tobacco processors for the first time obtained work and income security. Their savings increased and they put aside some of these to pay the premium for an integrated health insurance scheme run by SEWA. This scheme provides maternity benefits and reimbursement for hospitalisation. Reproductive and occupational health as well as general health conditions are covered.
Meanwhile, traditional midwives or 'dais' have organised into four health co-operatives. These make drugs available to SEWA members at a low cost through outlets run by local women. In this way health expenditure is brought down and women obtain standard quality, life-saving drugs for themselves and their families.
2. Integration of Health and Family Welfare Services
In addition to linking population programmes to work security it is imperative that existing health and family welfare services themselves be integrated. This implies that the current approach to health services in India has to be changed. A more holistic approach to health has to be implemented at the grassroots level. At the village level this would mean that the auxiliary nurse-midwife (ANM) would not only provide family planning services and immunization, but also make anti-T.B drugs and other services available to local people.
3. Decentralized Planning, Implementation and Monitoring of Health Programmes
Apart from developing health programmes according to women's needs and priorities, local groups in villages or urban communities must be strengthened in a way that enables their active participation in both decentralised planning and implementation of programmes. This would mean that people, especially women, would be actively involved in setting priorities and objectives at district level, by participating in health boards and communities. These boards would also undertake monitoring of plans and programmes, making the necessary corrections and changes. In some districts, certain health programs could be handed over to women's and people's groups mahila mandals, unions, dai cooperatives (midwives) and others - for implementation, with both delegation of decision-making and resources handed over to them.
As mentioned earlier, the Ministry of Health and Family of Welfare has entrusted us with running RCH diagnostic and screening camps, essentially village-based mobile RCH clinics, in three rural districts. We use these also as an opportunity to share health information called "Know Your Body" with village women. And then there is a special partnership between the government of India, the state government WHO the Ahmedabad Municipal Corporation and SEWA to control tuberculosis by the DOTS method. SEWA is responsible for this programme in two of Ahmedabad city's wards and a third is in the offing. Laborotaries have been set up in working class neighbourhoods. Our member's daughter have been trained as barefoot lab technicians and have reduced the prevalence of T.B. in their communities. These have been mutually enriching partnerships from which all concerned have contributed and learned from each other. But most of all, they have resulted in the reaching of services to women and their families including health information and education. And we are now beginning to gauge the impact. Reduced levels of morbidity and mortality are being seen.
4. Strengthening the women's health approach
All aspects of women's health across the life cycle must be strengthened. This would include strengthening the various components of women's health : occupational health, reproductive health, maternal health, mental health and nutrition. Family planning services should naturally be an integral part of women's health services. However, as women's groups have often observed, there is a need for a more sensitive approach, and one that pays close attention to the quality of services and follow-up after acceptance of contraception and terminal methods. This includes including programmes for infertility too. Women must feel safe and be assured that their overall well-being is considered important, only then do they participate in and use the available health services.
5. Promoting Health Education and Information
One major conceptual block that we need to overcome is our belief that health is something to be "delivered". We need to recognize that individual people, families and communities can stay healthy if they learn to get care of their own health and well being. This is by no means to say that health providers and health infrastructure have no role to play. Obviously they do, but roles have to change, enabling people to take control of their own health, rather than controlling people's health or having them be passive recepients of services. At SEWA, our experience shows that when simple health education and information is available to women and men, they feel more in control over their own health and indeed their very lives. When we trained our first group of 40 rural and urban 'barefoot doctors', other women saw how these women's lives had changed. They saw that not only were the 'barefoot doctors' healthy, but also that their families and communities began to be healthy too. Oral dehydration therapy and early detection of respiratory infections prevented costly hospitalization, and there are so many more such examples. Thus, SEWA's members began demanding health education and information - simple, understandable 'do's and don't's' and where to go for what type of care if and when illness struck in the family. Hence, health awareness training like 'Know Your Body' classes were organised, and women even stayed away from work and their valuable daily earnings to learn how to stay healthy. Health education by itself, however, is not a panacea. First, a back up of referral services is required to be in place. People want curative care as well as preventive health information. Also, they need a forum where they can share their experiences and ask questions, in an atmosphere of trust and sensitivity. Finally, organising health education for the poorest groups is a slow and labour intensive activity, involving close monitoring and follow-up and, above all, constant contact with people and communities. All of these are not easy to organise and upscale, and yet there is no other way. The decentralised type of planning and implementation described earlier is well-suited to promotion of health education in both rural and urban areas, according to the needs of local people.
6. Promotion of Nutrition
Poor nutritional levels, especially among the poorest populations is a major cause of all morbidity and mortality. The protein and calorie deficit suffered by poor populations in India leads to low levels of health. The interaction between nutrition and infection is a well-documented, scientific fact. And yet we are not able to make sufficient in-roads vis-à-vis improving the nutrition status of our people. One major reason is lack of purchasing power due to poverty. People are simply too poor to eat the quantity and quality of food required for health. This is a difficult and long-term issue and has to be tackled through enabling them to obtain full employment especially work and income security, which will help them move toward food security. But food security is not a matter of affordability alone. In many rural areas, and sometimes even the cities, poor families are unable to obtain foodgrains in the quantity and of the quality they require. This was borne out by our own study of the Public Distribution System (PDS) conducted in urban and rural areas some years ago6. To increase access to foodgrains and other essentials, especially in the remote rural areas, SEWA members have organised their own PDS called "Shakti Packet" which includes coarse grains like 'bajra' (millet) and essentials like tea. It is an unsubsidised scheme, and women buy foodgrains wholesale from the market, package and sell these to others in their villages. In 1997, during floods, women in the marooned villages of Kheda district received "Shakti Packets" which they paid for and ever since, this PDS run by women has been popular in that district as well. The point here is that food in appropriate availability quantities and quality and affordability are crucial determinants of health and well-being and therefore, must be given due priority. One way, would be to hand over the running of the PDS to local women's groups, people's organisations and NGOs. There are several examples where this approach has provided important services preventing hunger and unnecessary expense to local people.
7. Special Programs and Outreach
Special programmes for improving health need to planned and carried out in the poorest regions of the India. These would include workers of the informal economy, especially women, tribals, poor desert communities, artisans, salt workers, gum collectors and other vulnerable groups.
These special programmes should include occupational and overall health, mobile dispensaries and RCH clinics and other ways to reach services to people's doorsteps responsibility for implementation may be given to local people's association, unions, or NGOs actively working with these communities.
8. Tuberculosis as a priority
Tuberculosis (T.B) is a major source of mortality and morbidity. India is already implementing the Revised National TB Control Programme (RNTCP) in several districts, through the DOTS approach. The latter has been found to be an effective but very labour intensive strategy. Again, without the kind of partnerships mentioned earlier, it is unlikely that we will be able to make significant changes in the prevalence and incidence of TB. DOTS necessarily entails a localized, decentralized approach, with implementation by government and others who can invest the time and energy on individual patients. Our experience in collaborating with government for TB control through DOTS has been positive. There is now a need to upscale and expand this to include a number of districts in our state of Gujarat and others.
9. Capacity Building of Local Personnel
There is a tremendous need to strengthen the knowledge and skills level of both government health functionaries and local traditional healers like herbalists, bone-setters and 'dais' (midwives).
As far as government functionaries are concerned, their whole training has to be examined and altered to ensure a more community-oriented and holistic approach. Sensitization has to be built in through exposure trips, partnering with people's organisation and NGOS and more field experience. Our experience at SEWA is that when we work together with government doctors and other health functionaries mutual learning occurs. The health functionaries say that their whole way of working and communicating with the poor undergoes changes. In addition both government and non-government health personnel need constant encouragement, support and even ongoing sharpening and deepening of their knowledge and skills. Similarly, local healers need a tremendous amount of encouragement support and capacity-building inputs. First of all their valuable contribution towards maintaining the health of local people needs to be recognized. Their experiences, skills and knowledge need to be respected and used as a base for further strengthening of these.
The current tendency by some policy makers to wish away these traditional health functionaries, hoping they'll simply disappear from our villages, must be replaced by a positive approach to these healers. We should recognise that they are not only part of our cultural traditions but also that they are here to stay because they are useful to local people. In fact, they are a tremendous resource and if involved in need-based training and then constant dialogue and engagement with the government and private health practitioners and policy makers, local healers like 'dais' can provide services to many people currently not obtaining these. For the capacity-building and skills upgradation of dais for example we need 'dai schools' in every district, run by a technically competent trainer committed to transferring her knowledge and skills to dais. Each dai would then be registered, have an identity card and could even be assigned some tasks - antenatal visits of all pregnant women in the village for example. At SEWA, we have started a 'dai school'. We find that dais are not only enthusiastic about learning, but also that their newly acquired skills result in greater respect in their communities. The latter now pay a fee for their services.
10. Disbursing Low Cost Drugs
Immediate action needs to be taken in the matter of making low cost, safe and good quality life-saving drugs to the people of our state. One of the major medical costs borne by the people and leading to poor compliance of treatment, is the prohibitive cost of many drugs on the market. When people's cooperatives sell low cost drugs, as at SEWA, they not only provide an essential service at people's doorsteps, but also to develop health education and other programmes, and to make these organisations self reliant.
11. Health Insurance
As mentioned earlier, poor health and sickness is the number one stressor in the lives of the poor. One way of supporting them in times of health crisis is through developing a health insurance scheme, in a phased manner, as health insurance is not easy to plan and implement. First and foremost, people will not pay up any premium unless they are assured of good quality, timely and useful services. Then there is the question of working out the economic viability of the scheme and the actual mechanics of it : who will be eligible, where will the medical care be available and how, and of course, how will people obtain the actual benefits of health insurance. These are difficult issues but slowly we need to turn to these if our people are to be protected from health risk and the downward spiral towards poverty and indebtedness. Family planning services would naturally be an integral part of women's health services. However, as women's groups have often observed, there is a need for a more sensitive approach, and one that pays close attention to the quality of services and follow-up after acceptance of contraception and terminal methods. This includes including programmes for infertility too. Women must feel safe and be assured that their overall well-being is considered important.
12. Strengthening and sensitizing health providers at the local level
Both government health providers like Auxiliary Nurse Midwives (ANMs) ANMs and male multipurpose workers need strengthening and training to orient them to work with and for poor people, and according to their needs and priorities. ANMs, in particular those working in remote areas, need support of various kinds, including for their physical security. But their performance, indeed their and other health providers' very presence, needs strict monitoring by both the health system and local people, especially through the local village committees or panchayats.
13. Encouraging and supporting male involvement and responsibility
Much has been written on male involvement and male responsibility in population and health. However, there are still only a few concrete examples in India where men, hitherto on the margins of health and population programmes, have become actively involved. The time has certainly come to develop programmes which actively address men's concerns and needs, and also encourage and advocate for their greater role, not only in reproduction but also in parenting and child - care. There are enough indications that in many parts of the country, men are interested in being involved and learning about health and reproductive physiology. Our own experience with health education with men has been a very positive one. Men not only learn about health and family planning, but also are open to questioning stereotypes and age-old attitudes towards women. A group of urban and rural men have been organised will soon be registered as Gujarat state's first men's health cooperative.
Along with our examples of constructive health action, there have been some which didn't work. We have been trying for years to involve scientists, engineers and designers to help, us develop better and safer work tools and processes. We'd like our members productivity and earnings to increase, but not at the cost of their health. And we've witnessed safe machinery being introduced but at the cost of women's employment.
In Kheda district of Gujarat when the tobacco factory owners brought in safer machinery safeguarding women's health they were displaced. Where a hundred workers, all women, got work, this was reduced to ten, and mostly men. And there were no alternative work opportunities.
But the other issue is that we have found it hard to interest professionals and technical experts in designing simple equipment and tools at an affordable cost. This type of of product design and development requires slow and painstaking monitoring of workers health and few seem to take up this challenge.
Another area of concern is the tendency to take-up vertical programmes, namely one-point programmes centred around one disease. We have learned that this approach doesn't work because communities think of their health holistically. They do not find a one-disease approach useful. Yet, there is considerable pressure on voluntary organisations to take up these vertical programmes, usually well-funded and designed far away from the villages where their implementation is to occur.
A case in point is the Indian government's AIDS control programme which is having some difficulty getting off the ground. While there can be no two opinions about the need for AIDS control, the question is one of approach. AIDS control necessarily involves sensitive issues which require close community contact and a holistic approach to health. Fortunately, there is now increasing recognition of this at the policy level.
And finally, training, health education and diagnostic health camps or mobile clinics can only result in positive health outcomes if there is constant follow-up. There is a tendency to think that diagnostic health camps with curative services will show results. In fact, it is the slow and regular follow-up activities, including intensive house-to-house visits, which ultimately result in changes. This is true for health education as well. The impact of educational activities through follow-up visits and discussions is rarely given as much attention as is required.
These then are some of the approaches which worked or are workable, and some which haven't, in SEWA's experience. Above all we have learned that organising people around their needs for work and health security is the key. What this means is that local people, especially women, should be encouraged to come together and collectively work to improve their own health - through local health cooperatives barefoot doctors training schools and other such initiatives. Only then will we be able to make health for all a reality for all Indians.
Notes
1. Noponen, Helzi & Kantor, Paula, Crises, Setbacks and Chronic Problems: The Determinants of Economic Stress Events Among poor Households in India, (unpublished) SEWA
2. SEWA Health Baseline Survey, 1999 (unpublished).
3. Schuler Sidney and Pandit Harshida, Empowerment and Reproductive Decision-making among Self Employed Women in Ahmedabad, draft report SEWA, February, 1994. See also: Population Research Centre, Utkal University, Bhubaneshwar and International Institute for Population Sciences, Bombay, National Family Health Survey 1993 - Orissa Summary Report, March, 1995.
4. SEWA Health Baseline Survey, Op.cit.
5. Food First, Unpublished Study, SEWA, 1990.