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HIV-AIDS
AND EMPOWERMENT MOBILIZATION
The role for mobilizers in the fight against this scourge
by Phil Bartle, PhD
Dedicated to Stephen Lewis
Study Handout
Introduction:
Perhaps the most devastating epidemic at the beginning of the twenty first century, certainly in developing countries, and especially Africa, is the rapidly spreading deadly disease of Acquired Immune Deficiency Syndrome (AIDS).
The fight to stop AIDS must be applied on many fronts. Perhaps the most important is the amazing lack of support from wealthy nations to provide medicine that will prolong life and hinder the spread of the disease from mother to child. While that problem may be beyond the scope of the community field worker, there are other important fronts where you, the community mobilizer, have important and effective roles.
Note (1): It is incomprehensible that, within a few months of a few thousand persons losing their lives in the utterly horrific attack on the World Trade Centre in New York, hundreds of billions of dollars were raised in support of the victims, whereas the preventable deaths of three million persons a year, can not bring the needed seven billion dollars that would turn around the AIDS epidemic.
The kinds of activities that can be undertaken by a mobilizer working to empower a low income community are varied. Some are for prevention, others are for mitigation. They include:
- Prevention: awareness aimed at behaviour change;
- Prevention: providing materials;
- Prevention: creating alternative sources of income (eg for sex workers);
- Prevention: halting drug use and shared needles (including health workers);
- Mitigation; meeting the needs of orphans;
- Mitigation: children helping grandparents (missing school, especially girls);
- Mitigation; shortage of teachers;
- Mitigation; shortage of employers; and
- Mitigation; shortage of leaders.
We will look at each of these in turn. First, however, let us review the role of the mobilizer in the community, and your methods aimed at empowering the community.
Community Choice; It Must be Their Problem and Their Solution:
You have made a participatory appraisal with the community. They have identified the large number of people dying of AIDS as their highest current priority problem. What can they do to make their community more healthy?
You do not provide them with the answers. You draw the answers out of them.
You challenge them to justify the actions that they must choose to solve this problem. You review the consequences of their various choices. If you tell them what to do, then they will know that the solutions you suggest are your solutions. That provides them with a good excuse not to follow them through, and to allow them to fail. If they provide the solutions, remind them that you are only there to facilitate, but the decisions are theirs.
Make sure that their plans for action are written on the board for them all to see, and that they are recorded for future reference.
There are two kinds of rational solutions available at present: (1) preventing the further spread of the disease and (2) mitigating against the effects of the disease as it has so far progressed. There is no known cure for the disease so far, and the medicines that will prolong the lives of those with the disease are not available (in poor countries).
Prevention: Awareness Aimed at Behaviour Change:
AIDS is surprisingly difficult to get. HIV does not transmit as easily as many diseases.
Knowing how to prevent getting AIDS is one half the solution. Willingness to make the required changes in behaviour is the other half. As Mao Tse Tung said, "A chain is only as strong as its weakest link." If you have one without the other, you will not prevent the spread of the disease. Knowledge and Willingness.
Knowing how HIV is transmitted, the first half of the solution, is important. That includes knowing how HIV is not transmitted; many myths have to be debunked. The virus must be in a human fluid and at body temperature. It will die outside such an environment after 17 seconds (give it 20 for good measure). It can not be picked up in a swimming pool, or by sitting on a toilet (20 seconds after being used by an infected carrier).
Hugging an AIDS victim will not give you HIV, nor sleeping (only sleeping) in the same bed. Sitting in the same classroom even at the same desk, eating a meal at the same table or carpet, drinking from the same cup, shaking hands in greeting, or dancing closely - will not transmit the disease.
The two most common and effective methods of transmitting the HIV virus is by sexual intercourse or by sharing a needle for injection. The intercourse can be oral, anal or genital. The needles can be those used for illicit drugs or for medicine in a clinic. The intercourse itself can not cause AIDS; only if one partner already has the virus will it be transmitted. The needles themselves can not cause AIDS; only if the previous user has the disease and left some of the virus in the needle will it be transmitted.
Be sure your participants know that sex and needles (in themselves) do not cause AIDS, but that they can be used to transmit HIV.
Early on, many myths arose about AIDS. Because the first victims in the USA were of Haitian descent and/or homosexuals, many people mistakenly believed that homosexuality caused aids (it does not) or that it originated in Haiti (it is unlikely). In many parts of Africa, it is still thought that anal sex causes AIDS; it does not.
Some practices increase the ability of AIDS to be transmitted. Anal sex, for example, often results in tiny tears in the skin, and allows blood to intermingle. A practice in some areas, of a woman causing some minor haemorrhaging of the vagina (by infection and rubbing some animal faeces on it) so as to increase the pleasure of men, allows blood to intermingle more.
An important issue, which needs detailed discussing with your participants, is that sex is involved, and there are many strong views about sex, and the discussion of sex. There are many taboos about discussing sex, guilt feelings, discomfort, fear of public disclosure, and notions that it should not be a topic for public discourse. We like to pretend that it does not exist.
The desire for sexual intercourse (libido) is a normal, healthy, human process, as is hunger, thirst or the desire for sleep. Perhaps because of the heavy restrictions we have, reinforced by most religious admonitions (when, where, with whom, how, what), we overlook the fact that it is a God given desire, and pretend that it does not exist. We have invented many words or phrases to use as a substitute. We forbid that growing children and young adults, those who have the strongest desires and the lowest information and knowledge, should be taught about it in a rational, factional, logical manner. You must challenge your participants. You are not there to tell them what to think. If they do not discuss and consider sex and disease transmission, however, then death will overtake the whole population. It is a life and death topic, and they need to overcome their irrational fears about discussing it.
Just knowing how HIV is transmitted, however, is only the first half; alone it will not prevent the spread of AIDS. The second half of the solution, prevention, requires that the people are willing to use their information and change their practices so that the virus can not be transmitted.
Sociological surveys have revealed that many people are discouraged and depressed, know how HIV is spread, and practice unsafe sex and share needles. They feel so poor and powerless, know they do not have long to live, and wish to enjoy themselves before they go. This is especially prevalent among street children in the rapidly expanding cities of poor countries. Some persons infected with the virus become angry, and their thoughtless reaction is to kill others by deliberately spreading it.
In many societies, women are expected to be passive and obey the wishes of men. For most men, wearing a condom during sex is less pleasurable than not wearing one. If those men wish to have sexual pleasure in ways that contribute to transmission of HIV, then women who may know how it is transmitted still may feel forced to contribute to transmission. As long as sexual practices are not discussed in public – churches, mosques and temples, schools, radio, TV, town meetings, local council meetings, wherever people come together to discuss public issues – then men who prefer to not wear condoms will not have their consciences pricked. They will continue to engage in unsafe sex without thought.
The only answer is to encourage a positive attitude. When people do not feel cheated, but accept and are grateful for what they have, and are hopeful that they can take action for a better future, then the negative attitudes will be defeated. You can not remove a negative by a negative, you need to fill the space with a positive, and the negative will just wither away.
If your community members are willing to do what it takes to inform the public, and to put social pressure on people to consider changing their behaviour, then an awareness campaign is needed. More about the community mobilization approach to awareness campaigns is described in the document, "Mobilizing for Civil Society."
As in most community work, a few examples of success lead to more and greater successes. If you stimulate your community members to unite and choose a practical project, and if it germinates and develops, you also propagate positive attitudes. Perhaps you need to start with something else, more "do-able" and simpler. Lower your (and the community's) sights and obtain a few success stories first; then tackle the more difficult ones.
Remember that prevention by behaviour change requires two equally important parts: (1) understanding of how HIV is transmitted and (2) willingness to change behaviour to prevent its spread. Understanding and willingness can be encouraged using community empowerment techniques.
Prevention: Providing Materials:
Perhaps the best form of sex for preventing the transmission of HIV is abstaining – totally. When people begin to think more realistically, overcome their fears of frankly discussing sexual activities, they will come to realize that abstention is quite rare, not to mention unrealistic. Even highly respected persons who have sworn publicly to live celibate lives have been known to engage in sexual intercourse.
After abstention, what is in second place? Condoms.
Where condoms are freely available and inexpensive, it is easier for those who wish to have sex but not encourage HIV spread, to obtain and use them. This is usually easier in urban areas where shops and kiosks can sell them and customers discretely purchase them without much fuss. In rural areas, obtaining condoms may be more problematic. Here you need to encourage the community to be more fearsome and overt. Again, refer to Civil Society.
If community members are serious about preventing AIDS, you let them know, then they can organize a condom provision organization (as an NGO), and make it known through lectures and presentations in churches, mosques and temples, schools, and public meetings. If machines that can dispense condoms in private places such as washrooms are not feasible, then alternatives must be sought. Both men and women can be available to sell them, discretely, to men and women.
A small organization of local volunteers can be trained to visit schools, churches, mosques and temples and public meetings to demonstrate the use of condoms as a means of preventing the transmission of HIV. When reticent individuals suggest that selling condoms is not a moral thing to do, remind them that this is a life or death issue.
Below, it is pointed out that the most important non-sexual transmission of HIV is through sharing needles used for injections. In a manner similar to providing inexpensive and effective condoms, the community may wish to set up an NGO for providing clean needles. As in all your work, do not do the job for the community members (that weakens), organize them and encourage them to do it themselves through their organization (that strengthens).
Prevention: Alternative Sources of Income:
An important vector in the spread of AIDS is in the sex trade industry. Many individuals, especially women, feel forced to get into the business because of poverty and obligations (such as providing school fees for children). They find themselves having sex daily with many partners. Many of their customers demand that they do not use condoms. This is a fertile field for the transmission of the HIV virus.
Sex workers, along with drivers, are among those with the highest rates of HIV infection. Because poverty lies at the root of much of the participation in the sex trade, then anti poverty activities, especially income generation, are possible means of getting people out of the business, and into alternative methods of obtaining cash.
Three modules in this site are dedicated to income generation, and the methods you can use to set up a scheme for the generation of income. These include: (1) Principles of Income Generation, (2) Building a Micro Credit Organization, and (3) Skills Needed to Run a Micro Enterprise.
If your purpose is to use income generation as a method to entice individuals away from the sex trade, then you must work directly with those sex workers in organizing and training them. Not only should your own behaviour be impeccable, you need to dialogue with other community members for them to understand your motives and goals. They need to become sympathetic to the plight of sex workers, and learn to see them as victims of circumstance rather than persons of free will who wish to flaunt the mores of their community and society.
Public awareness is best done by the community rather than for the community.
Prevention: Halting the Use of Shared Needles:
Apart from sexual intercourse, the second most important means of transmitting HIV is by shared needles.
When a needle with a syringe is used to inject drugs or medicine into an infected person, the virus is deposited (in very small amounts) on the inside of that needle. If that needle is used again after a very short time, that virus is inserted into the body of the second person. It does not matter if the needle is being used for injecting illegal drugs by addicts, or used by medical professionals to inject legal medicines into patients. The practice is a means of transmitting the virus. In both cases, the reason for using a needle on more than one person is to save money. Saving money in this way costs lives.
Since an infected person may not show any symptoms of AIDS for several years, it is not easy to identify infected persons as carriers of the disease.
What can you, the mobilizer, do about shared needles?
Again, as said many times on this site, do not lecture; do not nag; do not preach. If the community members had identified the large number of people dying of AIDS as a problem, then you have an opening. Review with them about their available options, prevention and mitigation.
If the members recognize that there is a practice of sharing needles, however they are being used, then you challenge them by asking what strategies are available. If they see a possible strategy of behaviour change, let them know that behaviour change requires both understanding and motivation. They can not politely agree in a council meeting that behaviour must be changed, and pass a resolution that quietly gets recorded in the books.
The information must overcome the fears and taboos of discussion in public.
Respected local people, known to community members, must publicly show their support for a change in practices. They need to speak out in legitimate meetings, in schools, in churches, in mosques, on the radio and on television.
Both drug addicts and clinic patients must know that they must demand to have clean needles as a protection against transmitting HIV.
The community – not you – can organize an advocacy NGO to raise public awareness and encourage the insistence on clean needles. You can guide them and stimulate them.
Mitigation; Meeting Needs of Orphans:
The disease of AIDS does not strike individuals randomly in society. It was mentioned above, for example, that sex workers and lorry drivers have especially high rates of infection. These have interesting consequences. Surprisingly, there is no resulting shortage of sex workers as they die, because the higher rates of poverty drive more individuals into this occupation. The inexperience of new sex workers may result in more unprotected sex, which raises the death rate.
Experienced drivers, however, soon die, leaving a shortage of experienced drivers, and the result being less experienced and lower trained drivers becoming more frequent on the road as they replaced those who die. Increased poor driving on the road causes more accidents, and higher injury and death rates.
In society as a whole, there are other categories of individuals who are at higher than average risk of becoming infected. Demographic studies of AIDS victims reveal that it is the movers and shakers in society who have higher rates of infection. People who get things done, people who initiate actions and propose ideas, are often people who have higher libido, and engage in more casual sex with multiple partners. This has huge sociological consequences, the most impressive being that economic, political and social development is not only slowed, it sometimes reverses. Be careful, this category includes community mobilizers. Later we will look at mitigation activities indicated for the resulting decline and reduction in teachers, employers and leaders.
First, however, we look at another demographic consequence. Not surprisingly, AIDS affects people in the child producing years of age. Since most of these people have begun producing children, then die of the disease, AIDS has produced an overabundance of orphans. What happens when a disease removes a large proportion of people of child producing years? The demography is interesting; the sociological consequences disturbing. The age pyramid, rather flat already because it is a poor community (ie a greater proportion of dependent children than for a world average), becomes pinched in the centre. Grandparents remain the providers for children. In the seniority of their lives, when they have reached an age of well earned rest, they have more work to do. Historically the parents had gone to the cities to earn cash but, if they are dead, who is to provide the cash for the grandparents to raise the children?
The majority of those grandparents are women. No rest.
When you are in dialogue with the community, you discover their priorities. If community members say that their children are not cared for enough, then you ask them what they are willing to do about it. If they say some outside agency should come in and care for the children, that is a non-starter. It will not happen. If, however, the community decides that the problem is important enough that they will organize a CBO or NGO to care for them, then they will be noticed. More realistically, however, the community has only resources for forming a task force that will provide group lunches one day a week, all orphans welcomed. That realistic strategy can become the core for a larger organization, handling more resources, later.
If community members can commit themselves to providing food to the task force once a week, they make a very important step. Again, recall the moral of the story of the two boys; when the community starts helping itself, it will not guarantee outside assistance, but if it does not then it is much more likely to never obtain it. See the document on Fund Raising. People are more willing to pitch in (contribute) when they see results. Not all can provide food. Some will be able and willing to provide other kinds of assistance (management, cooking, raising money, keeping the accounts, collecting clothing) and will do so if the organization achieves some ─even small─ successes.
If the community decides to do nothing, then that sends a powerful message to possible outside donors – that the community does not care enough to make an effort. Remind community members of that.
Mitigation: Children Helping Grandparents:
The demographics of AIDS has further social consequences.
When so many persons of child producing ages are missing, and their children must be raised by the grand parents, then many children are recruited to help out.Because these tasks have historically often fallen to girls, they continue today. Children, especially girls, are taken out of school for two reasons. These are: (1) they are recruited to help the grandparents raise the other children, and (2) school fees are lacking, and girls are the first to go.
What can the community do about this, and what is your role as mobilizer to encourage them?
If the community sees this as its priority, it can organize to mitigate the situation. It can form a community task force to provide some of the parenting, perhaps on a regular weekly basis, for the children of the community. It can organize a task force to provide labour, again on a weekend basis, to help the grandparents clean compounds, do laundry, fetch water and other household chores that they find difficult to do. It can find community volunteers to provide some home schooling for the orphans. The children must still help out at home, but they can get some education while they do.
Again, the strategy is to start small, using the limited resources of the community, not seeking full coverage. Fund-raising can start. Organizing can become a channel for managing outside resources.
Doing nothing will surely encourage the situation to become worse.
Mitigation; Shortage of Teachers:
Among the victims of AIDS, the movers and shakers of society, the social leaders are often the first to die. In many villages in Africa, whole schools, and the large majority of other schools, have classes with not teachers now. Similar situations are found in other parts of the world devastated by AIDS.
In the early sections of these training modules, you are introduced to the idea of Hidden Resources. Communities should not hide their resources in the hopes that pity will move donors to provide charity. By emphasising self reliance, the mobilizer brainstorms with the community members to identify otherwise overlooked resources. These could be retired skilled or knowledgeable persons who could not put in a full work week, but could provide (perhaps in return for a few meals) a few hours per week, teaching some of their knowledge and skills to the children.
Even though a full school curriculum can not likely be provided, it is much more reasonable to organize functional literacy and numeracy classes. See the module on Literacy. It requires willingness, motivation, organization, planning and management. It can be done as a community project. Start small. Success breeds success.
Once an organization is created and taking action, others will join in, and others become more willing to contribute, including outside donor agencies.
Mitigation; Shortage of Employers:
Among the most economically important section of society decimated by AIDS are the employers. These are also among the movers and shakers of society.
When employers go, then jobs too go. Rising unemployment is another of the disastrous consequences of the AIDS epidemic in poor countries.
If this is seen as a priority problem recognized by the community where you work, then the answer is to create more jobs. These do not appear spontaneously. If the community members want to create more jobs, they can do so for themselves by participating in the kind of income generation scheme explained in this site. There are three training modules; start with Principles.
Mitigation; Shortage of Leaders:
Finally, among the shakers and movers that have been decimated by AIDS, the leaders are included. Leaders here refer to the range of leaders, including politicians, civil servants, heads of schools and institutions, corporate leaders and all who contribute to the society through their leadership.
As leaders disappear, the answer, for you the empowerment mobilizer, is to help create new leaders, and to encourage transparency, accountability, inclusivity and other elements of good governance, by stimulating and organizing community development.
Make organization (whether social, economic or political) and its leadership more efficient and effective. Help recruit, encourage, support and develop new and effective leaders. As their organizations and society suffer from the reduction of existing leaders, good community organization can make its leaders and leadership better, as mitigation against these negative consequences of the scourge.
Conclusion:
The fight against AIDS has many fronts. You can not alone work on all of them. Use your community empowerment techniques to fight it where you can be effective.
AIDS is a huge problem. While it may be overwhelming, do not let it become an excuse to get depressed and do nothing. While there is no cure, and it is deadly, there are two kinds of action the community can take with your stimulation and guidance. These are (1) prevention and (2) mitigation. While outside assistance would be welcome, it is not spontaneously coming. Do not depend upon it, and do not allow your community members to depend upon it, no matter what the moral arguments for demanding it.
Remember the important principle illustrated by the story of the two boys. If your community organizes and begins to help itself, outsiders will see that and be more pre-disposed to add their assistance. People will become more willing to contribute if you (your community) has already started something. If you stimulate the organization and action of community based organizations, outside donors and donor agencies will be more able to channel resources to your community through them.
This document can not stand alone in helping you design a strategy for preventing and mitigating against AIDS. It links to and calls upon many techniques and principles explained throughout this series of modules.
Use them.
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For medical notes on HIV AIDS by Dr. Edward Anafi, click here.
Also see: http://www.youandaids.org/
Health Education:
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