World AIDS Day 2006: Accountability (Part 1) by David Patient & Neil Orr (11/2006)
This World AIDS Day - 1st December 2006 - marks the 18th anniversary of the first ever World AIDS day, held in 1988, where the theme was Communication. The age of 18 years is synonymous with coming of age, the rite of passage into adulthood where a person becomes legally responsible and accountable for their lives. Therefore, it is appropriate that the theme this year is Stop AIDS: Keep the Promise - i.e., accountability.
With events marking this day across the world, perhaps we need to pause for a few moments and consider what the term accountability actually means, specifically in terms of HIV/AIDS. The dictionary defines it as the state of being accountable, liable, or answerable.
The next question is: Who is being asked to be answerable to whom? Donors, aid Agencies, many governments and businesses have, in many areas, stepped up to the plate and contributed resources and skills to do their part in this pandemic, particularly in the field of treatment. Some have not. However, progress is being made at national, regional, corporate, and organisational levels. No doubt, the statement keep the promise is directed at agencies to do more, spend more, and generally try harder. Considering the scale and impact of the pandemic in Southern Africa, this sentiment is appropriate.
However, what about accountability at the individual level: The people who are at risk of getting infected, and those already infected? How do we also apply accountability to the individuals that the myriad of strategies and agencies are seeking to serve? More specifically, why are new infections continuing - seemingly unchanged - year after year?
Most people know, for the most part, the basics of HIV infection - how you get it, how you prevent it, and the consequences of both courses of action. Some have other strange beliefs around the virus and urban legends and myths abound. However, by and large, most know the basics. People know how to prevent it and yet they still get infected in huge numbers. At the one end of the spectrum, there are commendable efforts to ensure treatment for those living with AIDS, slowly but surely turning HIV into a chronic manageable disease. However, at the other end of the spectrum we have a constant - and unchanging - increase in new infections. We are putting safety nets in place for those who get infected, but failing to stop the tide of infections.
Prevention, for the most part, has been a dismal failure across the globe, and more specifically in the developing world. Factually speaking, HIV is one of the most preventable viral infections known in the history of pandemics. Apart from mother-to-child transmission, using dirty needles, rape (a forced sexual act) or the rare unsafe blood transfusion procedures, for adults to get infected you have to engage in specific acts (unprotected sex). HIV is more preventable than the common cold or hepatitis, both of which you can get through casual contact, or mere touch.
The reality is that the great majority - 90% plus - of new HIV infections occur through consensual sex between adults: Why do people - in large numbers - knowingly (though not necessarily with a song in their heart) engage in unprotected sexual activities that place themselves at risk of HIV? We can no longer claim that they do not know to prevent infection, nor can we claim ignorance of the consequences. If one were to compare such high risk sexual activities with driving under the influence of alcohol, how can we not hold people accountable for their own infections?
We suggest that a comparison between unprotected sex and driving under the influence of alcohol is superficial and invalid - comparing apples to oranges. Instead, to understand the apparent wilful engagement in high risk sexual activities - despite knowledge, education, awareness of consequences - we need to examine the powerful motivations to engage in such activities: There are fundamentally two different motivational paradigms - perhaps even biological imperatives - that people are unconsciously driven to be accountable to: Personal, and group. The former concerns protection and enhancement of individual life, and the latter concerns protection and continuation of the groups' lives.
In basic sexual terms, this often boils down to recreational and procreational sex: If sex worker and youth prevention programs are anything to go by, it is comparatively less difficult to persuade people to wear condoms when they engage in recreational sex. Such sexual activities are for individual pleasure purposes, and preventive behaviours (e.g., condoms) do not unduly interfere with such purposes.
However, when the same methods are applied to procreational sex, they fail. There is little evidence that condom use is widely used in non-casual relationships. Our experience is that condoms are used outside the home, and not within the home. The term home does not necessarily exclude extramarital homes, such as the sugar daddy scenario and concurrent relationships, where younger women are being kept as mistresses by older (often married) men. Nor do ongoing extramarital relationships focus exclusively upon recreational sex. Often, procreation is a key factor binding the mistress to her lover.
Here's the bottom line for sex within many relationships: People want babies. You can't have a baby with a condom. Babies are the key to the future, and our sense of identity as a man or woman. As a result, people are risking their lives - and the lives of their partner(s) - to fulfil that identity. This is nothing new: History is filled with people risking life and limb for what they believe will ensure of their group's survivability.
The focus - and methodology - has been to ask people to be accountable for protecting their personal life, where this often conflicts with group survival, namely procreation: No babies, and your group has no future. It's not a matter of people being irresponsible - it's more about who (or what) they are being responsible to: Personal survival, or survival of the group, or the group's identity. We risk our personal lives and go to war for the sake of an identity, why should sex be different?
Let's get clear: We are not dismissing condoms - or any method - out of hand: Every method has its' merits and areas of potential success. Instead, our intention is to refocus our efforts to achieve a critical outcome: Prevention of new infections. In the last two decades we have confused the method with the goal. This is where prevention has failed: We have become fixated on one method, and ignored the evidence that it has not led us closer to the goal. For example, when we ask companies what they are doing about prevention, they proudly announce that they have condoms freely available. How many are married, we ask? What's the connection, they respond? That's the problem: We fail to see the connection between the purpose of consensual sex, and the likelihood of utilising specific protective measures. The method often does not fit the act, and HIV runs rampant.
The medical and social-scientific world has failed us in this regard: The focus has always been upon individuality, personal behaviours, and personal survival. Only when we can provide methods that extend our collective wisdom to helping the man or woman who wants to have children to do exactly that, are we likely to get anywhere with prevention. We have to banish the notion that prevention excludes procreation, and take it from there: "If you live with HIV, here's how you protect your partner, and have healthy babies".
Yes, we know...there is always a risk on transmitting HIV without a condom. We also know that people are taking that risk anyway, in large numbers. Isn't it time to get real about this, and focus upon lowering - not eliminating - that risk, given that we cannot stop the behaviour itself? A powerful motivation to get tested for HIV may be that, with correct monitoring of viral loads and ART where appropriate, safer procreation can occur, when viral loads are undetectable. We utilise ART for prevention of mother-to-child transmission, why can we not do the same for couples wanting to conceive? A combination of short-course ART and condoms (while viral loads are coming down) is much more likely to be accepted, if these methods allow couples to procreate once it is safer to do so. We are not going to achieve much until we start being pragmatic about this. A short-course of ART is a lot better - and cheaper, in the long-term - than a new infection of a partner, and young children left behind.
Fear of personal death has failed as a motivation strategy, both in prevention and encouraging people to get tested. Let's try something different: Desire for a future that includes children. When engaging people in these issues, we need to continue promoting condoms for recreational sex, but we need to be more pragmatic about the limitations of condoms in other situations, unless they are incorporated into a strategy that supports having babies safely.
Keep the promise - accountability: The promise to help those infected lead a normal life, with an eye on the big prize: Zero new infections. We are called upon to remind ourselves of these two goals, and shake off the comfort of confusing method with actually achieving something. We are called upon to be accountable for our efforts, and to ask whether we are actually making progress, or merely repeating the same (easy, comfortable) habits: Numbers don't lie. It's time we grew up, and starting bringing those numbers down. We repeat: Without including the possibility of having healthy children, prevention efforts have no future.
Is this the solution? Of course not! Will this be simple? Not a chance. There are many issues to consider, methods, medications, implications and consequences to figure out. However, we believe that this notion holds great promise for the future of prevention, for the simple reason that it recognises what many people are willing to live for, and die for.
Absenteeism & HIV/AIDS: A hospitality industry case study by Neil Orr & David Patient (03/2006)
This report concerns the impact of HIV and AIDS on absenteeism in a hospitality industry company in Gauteng. Sick leave is probably the most direct measure of the impact of illness and health at the workplace. However, family responsibility leave also has an impact upon work, but reflects instead the impact of the health of employee's families. If there are changes in illness patterns over time - such as due to HIV and AIDS - it would be seen in both sets of data.
This article follows a specific line of questioning regarding the health (and illness) status of employees in the company: Have levels of illness changed over time? How much? What has caused such changes? What does this mean for the future?
2. Data Description
The sick leave (SL) data analysed excluded: Family responsibility leave, maternity and paternity leave; injuries at work, study leave, and any other form of leave. Similarly, family responsibility leave (FRL) refers only to this category of leave.
The core business of the company that commissioned this study is hospitality. The data analysed covered a 76 month period, from July 1998 to October 2004, at the company's Gauteng unit. The data included 8,573 cases (20,425 days) of sick leave (SL) - averaging 2.38 days per case, and 1353 cases (3,105 days total) of family responsibility leave (FRL), averaging 2.29 days per case. The average headcount from 1998 to 2004 was 1,056. The headcount varied little from year to year. There was a consistent ratio of 16 days of FRL per 100 days of SL.
The data was grouped according to whether the person was on medical aid (OMA) or not on medical aid (NMA), for costing purposes. The OMA to NMA ratio was 40:60. This ratio did not vary significantly from years to year.
The raw data was sorted according to whether each illness incident had a specific description (e.g., flu, injury, etc) indicated in the database (known), or not (unknown). Unfortunately, the recorded reasons provided for FRL were not specific enough to be used in a detailed analysis of causes.
Headcount and average monthly salary data - split into OMA and NMA - were entered into the analysis. The average salary per month was obtained for each month of the period of analysis. The purpose of this data was to obtain a costing for SL and FRL over time. This article reports on percentage of payroll (e.g., sick leave as a % of payroll), not actual payroll numbers.
The average monthly salary was then divided by 21.67 working days to obtain the payroll value (cost to company) of one working day (OMA and NMA, separately). In order to present SL and FRL data in a meaningful manner, the number of days taken off from work was calculated as a percentage of the total possible working days (SL and FRL as %WD) for that same period of time. This allows direct comparisons over time, and calculation of costs-to-company for this leave taken.
3. Sick Leave & Family Responsibility Leave Trends 1998-2004
Figure 1 shows the trend in sick leave (SL) as a percentage of total working days from 1998 to 2004.
Sick Leave (SL) Days as % of Working Days (1998-2004)
From Figure 1 it is apparent that over a 6 year period commencing in 1998, sick leave (SL) - as a percentage of working days - has increased 528%, starting with 0.36% in 1998 and reaching 1.90% in 2004. Personnel on medical aid are consistently above the annual average (2.05% of working days; increase of 512.5% from 1998), and those not on medical aid are slightly below the annual average (1.80% of working days; increase of 666.7% from 1998). In both groups, the increase has been parallel to the annual increase.
A similar trend exists for family responsibility leave (FRL), with a 517% increase in FRL from 1998 to 2004. On average, for every 100 days of sick leave, there were 16 days of FRL. When the two sets of data are combined, the overall increase is 527.2% from 1998 to 2004. Current levels (2004) of SL plus FRL were 2.21% of all working days for all personnel, while those on medical aid (OMA) were 2.37%, and NMA were 2.11%.
OMA personnel are typically management, and thus OMA leave days have a higher cost-to-company. One possible reason is that it is easier for someone on medical aid to seek medical attention, and thus they do so. The same was found for FRL, even though the average person on medical aid has a smaller family (average of 2.8 members in this population) compared to those not on medical aid (4.1 members).
It is clear that both sick Leave (SL) and family responsibility leave (FRL) has been increasing significantly and steadily over the 1998 to 2004 (6-year) period.
4. Causes for illness: 1998 to 2004
The number of SL cases that state the actual reason (i.e., illness) were too few for the 1998 to 2000 year to include in this analysis. Therefore, this analysis focuses exclusively on the 2001 to 2004 period. The SL data was sorted according to the reasons stated on the sick notes submitted. The results are summarized in Figure 2 below.
It is clear that almost 50% of all sick days are due to only three illness categories: RTI, GI, and ENT.
In order to explain the annual increases found in sick leave, we need to consider two obvious possibilities:
Hypothesis 1: There is no increase in real illness, only increases in sick leave days taken. I.e., abuse of sick leave, primarily 1-day sick leave. This possibility can be tested by comparing data that excludes versus includes all 1-day leave. In order to make such comparisons over time possible, the data was transformed into a case-per-thousand (per month) basis.
Hypothesis 2: There is an actual increase in specific illnesses types, possibly related to HIV. The majority of personnel were between the ages of 20 and 35 years of age. Almost one third are between 26 and 30 years of age. This age group constitutes the highest HIV prevalence of all age groups (Dept, Health, antenatal figures for Gauteng, for age group 25-29, 1998 to 2003). If HIV is the primary cause for SL increases from 1998 to 2004, then common HIV-related pre-AIDS conditions would be escalating faster than non-HIV-related conditions.
An index for such common illnesses that increase in frequency in HIV-infected people was created, entitled P-Pos (for possible HIV-positive connection). The P-Pos index is not an indicator of who does and does not have HIV. Anyone can get a cold, flu or upset stomach. Illnesses with the least likely connection to HIV infection would be illnesses such as injuries (broken bones and motor vehicle accidents), backache, dental problems, and sinusitis. An index of such illnesses was created, entitled P-Neg (unlikely connection to being HIV-positive).
It is unlikely that the population would display marked presence of AIDS-specific illnesses. When a person develops AIDS illnesses, they are typically too ill to work, and placed on disability. ART had only been recently been introduced to those on medical aid, and uptake was quite low. Personnel not on medical aid did not have access to ART at the time of the study.
The results are illustrated in Figure 3 below.
There are two things that are clear from Figure 3:
- Excluding 1-day sick leave data made no difference to the trends for both P-Pos and P-Neg groups of illnesses. I.e., whatever is driving the increases in sick leave levels has little to do with the abuse of 1-day sick leave.
- P-Pos illnesses are in fact the main driving force behind annual increases in sick leave. P-Neg illnesses hardly change in frequency over time. In fact, it is clear from Figure 3 that the P-Pos category of illnesses - mainly RTI and GE - have doubled in incidence from 2001 to 2004 (100.2% with 1-day SL included; 89.9% with 1-day SL excluded). In contrast, the P-Neg category of illnesses has increased comparatively much less (34.6% with 1-day SL included; 30.5% without 1-day SL). In fact, the incidence in 2002 (21.7 cases/1000 per month) is almost identical to the incidence in 2004 (21.8). Refer P-Neg lines.
A closer examination of the specific illnesses in the P-Pos category (GE and RTI) found that both types of illnesses have increase in frequency: GE (especially gastro-enteritis) has increased 77.7% in incidence. In RTI (flu, bronchitis, pneumonia), the incidence increased by 112.8% from 2001 to 2004.
4.4 Statistical evidence of SL/HIV correlation
Although there is some evidence that the increase in sick leave is related to HIV, it is necessary to establish what these levels are, and what this means in terms of sick leave levels. This will allow us to establish future trends. The first factor is the clinical nature of HIV infection:
Generalized time course of HIV infection and disease
(Intermediate / Average Progressor)
Modified from: Centers for Disease Control and Prevention. Report of the NIH Panel to Define Principles of Therapy of HIV Infection and Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and Adolescents. MMWR 1998;47(No. RR-5):Figure 1, page 34. Epidemiology of Disease Progression in HIV / HIV InSite Knowledge Base Chapter / Published May 1998. Dennis H. Osmond, PhD, University of California San Francisco; http://hivinsite.ucsf.edu/InSite?page=kb-03-01-04
Figure 4 represents the average clinical progression from HIV infection to AIDS. In reality, individuals vary in how fast or slow this progression occurs. The variance in such progression forms a Bell curve, with the profile in Figure 4 as the median.
Based upon the clinical profile described in Figure 4, a typical HIV-infected staff member will experience illness at different times during his or her infection:
- Flu-like symptoms during seroconversion (i.e., immediately after infection). These symptoms are mild, such as seroconversion rash, or mild flu-like symptoms. Many people do not experience or notice symptoms at this stage.
- Relative Health: CD4 count above 350. Seroconversion is typically followed by several years of relative health, even although CD4 (Helper T-cell) counts slowly decline, and HIV viral load climbs steadily. The T-cell (CD4) count is adequate (above 350 to 400) to ward off most illnesses.
- Vulnerable: CD4 count 350 to 200. Once the T-cell (CD4) count reaches about 350 - typically after 6 years from infection - the immune system -although strong enough to ward off serious life-threatening illnesses, is weak. Therefore, common (non-life-threatening) illnesses become more frequent. Examples of such illnesses are recurrent upset stomachs (gastro-intestinal), and recurrent infections, such as herpes, thrush (candidiasis), shingles and respiratory tract infections. The frequency of these illnesses increases until year 8, namely the onset of AIDS illnesses.
- AIDS: CD4 count 200 or below. Once the T-cell (CD4) count drops below 200, AIDS symptoms (life-threatening) appear, and the staff member should probably be placed on antiretroviral (ART) treatment. In the absence of ART, disability ensues. Life expectancy - without treatment drops significantly from year 8 to 10, with most (untreated) people dying by year 11.
The previous paragraphs describe the average progression of HIV to AIDS. There are indeed anomalies and variations, such as development of AIDS-defining illnesses prior to CD4 levels reaching 200, and also the absence of illness in those with CD4 levels below 200.
Therefore, when looking at the sick leave cases for a specific year, these cases should statistically reflect the following components:
- Illnesses, accidents and injuries experienced by HIV-negative staff. Although there may be an increase in stress-related illnesses in this sector, these increases should remain relatively stable year-on-year. According to the 6-year infection-to-350-CD4 clinical progression model, 1998 sick leave would reflect HIV infections from 1992 and earlier. In 1992, this figure was 2.2% nationally, and 2.5% in Gauteng. Therefore, if there is a hypothetical ‘in the absence of HIV' sick leave level, this would be lower than the 1998 SL level of 0.36%.
- There should be a significant increase in the incidence of colds, flu, and gastro-intestinal incidents after 6.years of infection. I.e., from year 7 onward.
- There should be highly elevated levels of illness in those infected after year 8, (i.e., from year 9) followed by a drop-off as people develop AIDS and exit the work-force (unless treated with ART).
In order to determine whether sick leave is indeed driven by this specific clinical pattern, a Pearson's correlation coefficient (measure of linear correlation between independent and dependant variables) was obtained between sick leave levels (1998-2004) as the dependant variable, and the number of people infected (in each year) for 1 to 11 years. To do this, the total prevalence rates from each year were deconstructed into new infections, deaths, and the percentages of infected people infected for 1 to 11 years.
Year 1 consists of new infections from the same year as the SL data. Year 2 is sick leave correlated with new infections from the previous year. I.e., Year 2 reflects new infections occurring 12 to 24 months previously. For 1998 and 1999, the correlation was performed for those infected up to 8 and 9 years, respectively. The results are described in Table 1.
Sick Leave (SL) correlations with Years Infected
|Description: Sick Leave correlated with:||Correl.||Max = +/- 1.0|
|Year 1 (new infections 0 to 12 months)||Yr1 x sl||r =||-0.03|
|Year 2 (infected for 12 to 23.9 months)||Yr2 x sl||r =||+0.52|
|Year 3 to 6: Person has been infected between at least 3 and 6 years (max 11.9 months longer). No expected illnesses.||Yr3 x sl||r =||- +0.09|
|Yr4 x sl||r =||- +0.22|
|Yr5 x sl||r =||- +0.16|
|Yr6 x sl||r =||- +0.09|
|Year 7 to 8: Person infected at least 7 to 8 years (max. 11.9 months longer). Immune system significantly weakened. Pre-AIDS. CD4 count between 350 and 200||Yr7 x sl||r =||+0.36|
|Yr8 x sl||r =||+0.45|
|Year 9 to 10: Person infected at least 9 to 10 years (max. 11.9 months longer). CD4 count 200 or lower. Serious AIDS-related illnesses. Death possible.||Yr9 x sl||r =||+0.69|
|Yr10 x sl||r =||+0.47|
|Year 11: Person infected 11 years (max 11.9 months longer). AIDS. Death likely.||Yr11 x sl||r =||+0.81|
The correlations clearly show that sick leave is indeed linked to HIV infection, as it follows the expected associations with clinical stages of infection. I.e., the more people who have been infected longer than 6 years, the higher the illnesses experienced in sick leave incidents, per year.
There is an apparent anomalous correlation for year 2 (infected between 12 and 24 months). This reflects the period after seroprevalence when the viral load is at its' lowest level during the entire infection period. A similar phenomenon sometimes occurs when the viral load is initially driven down by antiretroviral therapy (ART), called IRIS (Immune Reconstitution Inflammatory Syndrome). We cannot determine the reason for this correlation.
What is important to note from the model, is that current infection rates have their greatest impact 7 to 11 years later. I.e., current (2004) increases in sick leave levels are the result of infections occurring in 1993 to 1997. The implications are this: Even if new HIV infections were brought to a total and immediate halt, there will be an increase in sick leave for at least a further 11 years. This is due to the fact that those infected 7 to 11 years earlier still need to go through the clinical cycle.
It is worth pointing out that until the 6th year of infection, there is hardlyany impact at all on sick leave levels. Efforts to extend this period of healthy time - e.g., wellness programs - would be well worth the effort.
It should also be noted that there is a one-year difference between the clinical profile of the unit's personnel and the average expected clinical progression profile. This may be due to the fact that the personnel in this company are slightly healthier than the normative group used to develop the average clinical profile (refer Figure 4), possibly due to factors such as quality nutrition in staff canteens, and access to good medical treatment for some personnel. Previous surveys indicated that at least one-third of personnel's nutritional consumption occurred in the staff canteen. Efforts to further improve nutrition and medical care were underway in 2005.
Stigma: Beliefs Determine Behavior by David Patient & Neil Orr (2004)
Many people are calling urgently for laws and policies to curtail or prevent HIV/AIDS stigma. This is a call for changes in structures. It is also a useless exercise, until such time as we examine the roots of stigma, and understand its very nature. Then we can build structures to support the understandings and mechanisms that alleviate stigma.
1.1 DEFINING STIGMA
What exactly is stigma anyway? For the sake of this discussion, we will define stigma as:
- A behavior or policy that
- Impacts upon fair and equal opportunities in a wide range of
- public and private sector areas, such as work, housing, security, education and health services, as well as
- personal and community areas, such as marital affections, property and parental rights, group affiliation, security, and kinship,
- Of a person
- Actually living with HIV or ill with AIDS, or
- Associated (affected) with someone living with HIV or AIDS (e.g., family and friends), or
- Perceived to be infected with HIV or have AIDS, or
- Perceived to be at risk for HIV infection or AIDS illnesses.
- Motivated primarily by the perpetuator (person or policy) of the stigma having knowledge or a perception (true or false) that the other person is infected or affected by HIV or AIDS.
HIV/AIDS stigma is essentially discrimination based upon HIV status.
In other words, it is not stigma if you lose your job because you did not do your job properly. It is however stigma if you did your job properly, but got fired because your boss discovered you are living with HIV.
1.2 WHY DOES STIGMA EXIST?
Core questions we need to ask are: What causes people to behave in a stigmatizing manner? What causes people not to change stigmatizing behavior, even when they have knowledge about this? Why are people treating their loved ones, colleagues, employees, and friends in such inhumane ways? Why is stigma so widespread, regardless of social, educational, or economic strata? How do those infected contribute to the perpetuation of stigma?
The answer is simple, at least conceptually: At the core of any behavior you will find a belief (or series of beliefs) that causes individuals or groups to behave in a specific manner. We need to strip away those beliefs to their core, before we can effectively counteract stigma.
1.3 THE NATURE OF UNCONSCIOUS BELIEFS
Important considerations include: (a) beliefs can be conscious or unconscious (e.g., socialized norms). Many beliefs are not conscious; (b) there may be beliefs that conflict or contradict each other: (c) The relative 'stress' of a situation influences the extent to which conscious beliefs are put aside, allowing unconscious beliefs to prevail. At the end of the day, it is the strongest belief that wins out.
More often than not, beliefs - especially unconscious beliefs - are presented as facts. For example, a sexist statement such as 'men are stronger than women' is defended as an 'obvious fact'. Defense of beliefs include "it's normal", "everybody knows this", "we've always done it this way", "It's my culture", and "the Bible says so". In other words, there is often little individualized thought or reasoning to support some types of belief - they are often merely accepted by the individual or group through socialization processes. Quite frankly, most people would not really be able to tell you the real reasons why they are discriminating against someone, as they have not really consciously thought about it.
It is not possible for us to influence any long terms changes in discriminatory behavior unless we have the courage to challenge people's core beliefs. It is not a comfortable - nor popular - process. All too often we are so busy worrying that we might offend a community's sensibilities that we do them a disservice, simply because we are too scared to take the risk of challenging these beliefs. If we do not challenge these core beliefs, we have failed in doing what needs to be done to serve our communities. We suggest that you think twice before tackling stigma, if your image and popularity is more important to you than being effective.
It is also important to keep in mind that many beliefs have never been discussed, even during socialization, and are absorbed through modeling and behavioral processes. For example, a child may learn how to deal with anger through violence by observation, not through rational discussion of the pros and cons of such behavior. Therefore, when we say 'challenging beliefs' we mean talking about them - bringing them into conscious awareness, and giving them words so that they can be expressed and examined.
This unconscious aspect of many deep-seated beliefs behind discrimination makes it problematic in terms of rational 'education and awareness' processes. Not only is the individual unconscious of some of these beliefs, they may also have no words to express these beliefs.
1.4 STIGMA AS AN UTILITARIAN SURVIVAL STRATEGY
There is also a category of beliefs concerning survival issues that are deeply
entrenched. This concerns the functional reasons for discrimination. An example is how groups approach and respond to major threats to their survival. The unspoken belief is to do whatever is necessary - including the sacrifice of the weak - to ensure the survival of the group as a whole. This is the 'utilitarian' approach - i.e., that the greatest good for the greatest number of people sometimes requires sacrifice of a minority.
1.5 STUDYING SOCIAL PHENOMENA - THE DANGER OF BIAS
Human behavior is not random. Instead, it has a structure and reason, instigated and directed by beliefs of various degrees of strength and conscious awareness. Just as the medical fraternity believes that an accurate and in-depth knowledge of the virus and the immune system will allow us to effectively counter HIV through vaccines and anti-HIV treatments, so a rational social scientist believes that an accurate and in-depth understanding of people's beliefs will allow us to understand and modify behavior to reduce vulnerability to infection, and also how to behave fairly towards those already infected with HIV.
The difference between a medical scientist and a social scientist is that a medical scientist studies something (e.g., a cell or a virus) that can be placed outside of him or herself, on a slide under a microscope. She or he studies something external. In contrast, a social scientist studies something of which she or he is part. This is the problem: A social scientist cannot separate him or herself from what is being studied. She or he has beliefs too, which may - and usually do - strongly determine not only where we look (and not look), but also how to view it, what is 'right', 'wrong', and so forth.
Social scientists - whether they like it or not - are just as powerfully affected by their socialization and survival-based beliefs, which create phenomena such as 'blind spots' - i.e., literally not seeing something because it contradicts fundamental personal beliefs. Another common pitfall is the intellectual justification of something according to a specific pre-existing belief system. I.e., we try to fit the facts into what we would like to believe.
1.6 PREGNANT HIV-POSITIVE EDUCATORS
For us, the watershed experience that shattered our perception of accepting blindly the popular beliefs of why people do what they do - in terms of HIV - was meeting one more of a long line of pregnant HIV-positive AIDS educator/counselors, who knew that she was HIV-positive before falling pregnant. If these people - the ones who have the knowledge and reasons - were not applying what they knew, there has to be something seriously wrong with our understanding of what is going on.
Stigma cannot be understood as a simple or largely conscious behavior. If we examine and seek to understand the beliefs behind stigma, we stand a chance of doing something about it. Just like any other apparently irrational behavior, at the core of stigma is a set of beliefs, presented as facts, that is creating discriminatory behavior.
So let us examine some of the possible unconscious (or conscious) beliefs that could explain the stigmatization of those infected with HIV:
2. BELIEFS THAT MOTIVATE STIGMA & COUNTER-ACTIVE MEASURES
2.1 BELIEF 1: "If you have HIV you are going to die, so I will not invest time or resources in you".
This means withdrawal of support from those who are perceived as no longer able to contribute to the survival of the group. This is the simple outcome of a group survival strategy, which has been a survival strategy used throughout human history.
Many years ago, there were reports that clinics in certain parts of Zimbabwe were told not to provide any treatment for those infected with HIV, including the setting of a broken bone. The reason was that this would be a waste of scarce resources. Whether this report was true or myth is irrelevant. What is relevant is that this report illustrates behavior based upon a belief that is quite fundamental and widespread in situations where resources are limited. We have heard this belief expressed in different ways by a wide range of people, including business people, the devoutly religious, politicians, and general public. No doubt, this belief causes outrage, as it should. However, this outrage needs to be tempered with the recognition that the rejection of those infected is no different from other - more personal - behaviors. We have all done something similar at some point in our lives, based upon an assessment of whether the other person will contribute to our lives in the future.
For example, when a friend tells you that she or he is leaving town, and moving to another city, many people start to withdraw immediately, prior to the actual departure. Emotional withdrawal - some say this happens to reduce the pain of loss - is common to all societies. However, when physical resources are limited, this effect is magnified, and expressed in more hostile rejecting behavior too, such as expelling family members from the home. Is this any different, or is it a matter of degree?
There are two sub-beliefs in this behavior, pertaining to HIV stigma: (a) It is believed, based upon what has been said in media and otherwise, that everyone who is infected with HIV is going to die. In other words, she or he is going to leave. Secondly, (b) she or he is going to get sick at some point, which means that scarce resources are going to be used, with no 'cure' to justify the use of those scarce resources.
How do we counter this? Well, for one thing, we need to start to be a little more careful of how we tell people about the dangers of HIV/AIDS. For two decades we have been drumming the same death and fear message into communities, and we are surprised at the stigma that emerges? We try to motivate through fear - terrifying all and sundry with HIV/AIDS - and we don't understand why people respond with 'irrational' rejection of those infected?
Outdated and (in our opinion) ineffective health motivation strategies have contributed directly to the stigmatization of those infected. You may argue that the same 'AIDS=DEATH' campaigns have emphasized that is okay to have casual contact and so forth, but this simplistic defense does not take the second reality into consideration, namely the utilization of scarce resources, for no apparent benefit (for the group).
So what do we do? How do we counter this basic (and functional, from a raw survival perspective) belief?
2.1.2 COUNTER-ACTIVE MEASURES
We suggest two strategies, both of which we have been applying with great success in Mozambique, in our Positive Living program:
126.96.36.199 Instead of using fear as the primary message and motivator, focus upon the effects of HIV/AIDS (or malaria, poverty, etc) on a desirable future, both by the individual and community.
What we mean by that is that few people have any sense of future beyond the immediate and short-term. For many people, dealing with the problems of today is infinitely more real and urgent than some unseen threat (i.e., a virus, for those who have a vague idea of germ theory, which is rare) that apparently can kill you sometime in the distant future: "If I do what you are suggesting (ABC prevention), I can go hungry today, and tomorrow".
We utilize methods where people become aware of long-term future-related goals - which we call the Future Dream - that is then emotionally energized through a simple process. Our view is that life is only protected - and respected - when it is valued. Furthermore, it is only valued when it (my life) is believed to be moving towards something desirable, pleasurable, fulfilling. We have found that when we do this process first - before HIV/AIDS educations and awareness - that prevention methods suddenly have relevance and genuine meaning to the individual. Then the ABC options/choices make sense to the individual, as HIV/AIDS literally stands in the way of the desired future.
We utilize exactly the same process for those people living with HIV, as they are no different from anyone else in believing that they have no future. (The issue of internalized stigma is discussed later). If we are to teach those infected how to live with the virus successfully, we need to ensure that they also believe that they have a future, and that there are good things still to come, that it is still possible to live a good life.
It is often assumed that those infected will do anything to stay healthy, when in reality this is not true: Many just don't bother, because they believe there is no point. The same rationale applies to HIV testing: What do I stand to gain (except anxiety) if I get tested? Without a good reason - i.e., improved quality of life - what other sustainable reason is there?
Our belief is that the first thing to die when a person is diagnosed with HIV, is their future. It dies in the doctor's office. The body follows a few years later, unless the future can be opened up again.
How often have you seen or heard an 'AIDS Sufferer' speak to an audience, with nothing to say except how miserable they are, and how hopeless-helpless they are? How many public 'AIDS Sufferers' cannot answer the most basic questions about HIV and AIDS? There is an assumption that publicly declaring your infection with the virus somehow translates into instantaneous expertise, or entitlement for public sympathy and support, when in fact it does not. In many ways - by virtue of the Victim Persona presented - those who disclose their status publicly perpetuate the belief that living with HIV/AIDS is helpless and hopeless, which in turn supports the unstated shared belief that people living with HIV and AIDS are simply an additional burden on a society with scarce resources.
It is imperative that public disclosure is encouraged, but with full awareness of the impact of such a disclosure. The bottom-line is that, in order to prevent victimization through stigma, the person living with HIV needs to ensure that she or he does not utilize the victim image in the first place.
It is a tragic reality that victims get persecuted, once sympathy has run out (which is fairly soon). People living with HIV or AIDS (PLWHA's) have exactly the same responsibility as those who do not, in terms of making efforts to contribute to the future development of the community. In other words, PLWHA's need to pay attention to what is called 'secondary gain' - the perception that Victim status confers special privileges and attention, and exemption from community responsibilities. People don't like it, and won't support it - they have problems of their own. However, when a person - any person - is viewed as contributing to the future of the community, this situation changes. Therefore, the helpless-hopeless 'AIDS Sufferer' image is counter-productive in the fight against stigma.
At a broader social level, we need to focus upon discussing and formulating a future that is desired. For example, politicians are often prone to focus upon the ills of the system (or their opponents) without providing the public with any vision for the future.
In the business arena, greater emphasis needs to be placed on how managing the disease - getting involved in taking care of the health of infected employees - is much cheaper than simply ignoring it, and paying the price in terms of lower productivity, absenteeism, sick leave, and so forth.
The essential recommendation of the above is that, regardless of HIV status, communities will reject and eject members who are considered a non-productive, non-contributing burden to that group. The exception is the elderly, who have already made their contribution, and very young children, who do not yet have the capacity to contribute. Therefore, one aspect of reducing stigma is for PLWHA's to earn the respect of others through engaging in a productive life, and not wallowing in 'sufferer' or 'victim' sympathy-seeking roles.
188.8.131.52 Focus upon the possibility of living with HIV, versus dying from AIDS.
This sounds very similar to the previous item, namely focusing upon a desired future. However, there is a slight - but important - difference in emphasis: In the previous item, the focus was upon working towards a life that is desired, whether that life is five years or twenty years. In other words, its' focus is the quality of life, regardless of the quantity of life. In the second item, the focus is upon quantity of life. I.e., what can you do to live longer? This includes advocating for better medical treatment, changing your diet towards immune-supporting nutrition, and attitudinal shifts that support longevity. The likelihood of a PLWHA in acting to increase the quantity of her/his life is not high unless the first item - increasing the potential quality of life (the why bother?' question) - is first addressed.
At a social and community level, it is critical that people hear and see that (a) it is possible to live well with HIV, for many years, if certain actions are taken; (b) that the infected person can - and will - add to the collective resource base for a long time, if she or he is supported in staying healthy. In other words, don't expect people to care about you if you do not care about yourself.
In many profound - and largely unconscious - ways, the perception that there is a possibility of an improved quality of life for all involved - real benefits - when supportive (versus stigma-based) behaviors are engaged, will go a long way to addressing some of the deep-seated beliefs that a person living with HIV is a burden to the group, and who needs to be ejected from the group if the group is to survive.
2.2 BELIEF 2: "HIV/AIDS is a punishment for sin".
Whether we like it or not, no matter how principled and objective we try to be, we cannot escape from the reality that the most fundamental components of our internal and external social interactions, laws and other infrastructures, are rooted in religious beliefs. Even those who claim to be agnostic or atheist, cannot escape from the socialization of these beliefs through education systems, the very words we use to explain our reality (right/wrong, good/bad), laws, and so forth.
There is not a single society that does not have - either explicitly or implicitly - a value system based upon some dogma, whether religious or otherwise. This does not mean that the dogma is good or bad - it simply means that it exists, and needs to taken into account.
One of our most basic social beliefs is that, when 'bad' things happen, something caused it. Whether this is because we assume the power to cause these things to happen, or whether it is because of some mystical process (when it is called 'sin'), we need to blame someone or something. Blame is a very powerful social force. From blame comes shame, and from shame comes the need to punish, to alleviate the shame.
When we tell people that if they do certain things they can get infected, it is automatically assumed - usually by all concerned - that it was their 'fault' that they became infected. The word 'fault' is used carefully here, not to mean the same as responsible/response-able.
Any HIV/AIDS educator will tell you - with amazement - how audiences seem to have an absolute fixation on where AIDS comes from. It appears bizarre - here you are, ready and willing to tell them how to protect their lives, their future, their children, and all they want to know is where on earth this disease comes from, and insist on spending valuable time on the subject. When you say that genetic tracing of the virus shows that it originated in specific areas of Africa, there is shocked outrage, and the most irrational attempts to reject what is considered objective scientific fact. This is not only from the average person - this rejection and outrage - it also comes from those who are supposedly highly educated too.
Why? Because, as mentioned before, there is an urgent and powerful need to ascribe blame and shame on whomever is at 'fault'.
Why do we use the word 'fault', versus 'responsible'? Because the word 'fault' (or 'blame') more accurately describes the emotions and thoughts involved. The words 'fault' and 'blame' imply that something 'bad', 'sinful', 'wrong' has happened, and that someone needs to be punished for it. In common usage, the words 'fault' and 'blame' are never used to describe 'good' things or behaviors, only 'bad'. In contrast, the word 'responsible' is used to describe 'good' things as well as 'bad' things, such as "Who is responsible for this lovely dinner?"
Have you ever wondered why it is possible to cause national outrage and reaction to the abuse of 20 young elephants (refer M-Net's Carte Blanche exposé a few years back, which resulted in the largest national post-apartheid protest response recorded), but it seems to be mission impossible to get widespread public support for the plight of hundreds of thousands of child-headed households (AIDS orphans)? It is a very useful exercise to ask people …
The response we got was simple: Animals are innocent, people are not. With people, someone can be blamed, which absolves us from any responsibility to help. Case in point: There was a report several years ago, that a terrible storm caused an oil ship spilt it's oil on the beaches of Cape Town, causing major catastrophe with the penguins population. At the same time, there was a terrible fire that swept through a large informal settlement, leaving thousands of people destitute. There was only enough money in the city's treasury to deal with one of the two disasters. They chose to save the penguins. Some people may find this amusing, but it illustrates the deep-seated belief we seem to have that, when it comes to 'bad' things, someone is to blame, and they need to pay the price. We seem to only have compassion for those we consider innocent.
Many people living with HIV will probably agree with this, especially when it comes to explaining stigma behavior originating from others. However, although this does indeed seem to explain some aspects of stigma, those living with HIV should keep in mind that they share in this belief. This is what is referred to as 'internalized stigma'.
It is incredible that, with so many people living with HIV, that so few openly protest against stigma. We joked a few years back that, if we were to start a political party only for those infected with HIV, we could win the next election. That is not going to happen, simply because the overwhelming majority of those living with HIV feel that their infection is their 'fault', and that they are to 'blame', and that they need to be 'ashamed'. Those that refuse to accept the 'blame' tend to try to blame someone else, which is probably the basis of 'revenge' infections. Regardless, the behavior is based upon blame/shame, which in turn is based upon the belief that 'bad' things need to be punished.
We are not sure where this fault/blame/shame phenomena is strongest - society, or those infected. It is probably evenly spread, with the one sector merely feeding and supporting the other in a co-dependant symbiotic manner.
The bottom-line is that most people accept this cause-effect (blame-shame/punishment) belief, including many of those who fight stigma or who care for those infected. In many stigma forums, the process merely involves the shifting of blame and shame, and consequently punishment. The problem is merely perpetuated.
The need to 'fix' stigma through 'punishing' those who blame/shame others, is no different than trying to 'punish' murder by hanging. Capital punishment serves no functional purpose apart from making us feel self-righteous and in control because we have had some form of revenge, despite the fact that there is no evidence at all that it actually reduces the incidence of murder. It just does not work as a deterrent. That's why the South African and Mozambican Constitutions are against capital punishment. In the same way, we cannot counteract stigma by committing the same 'crime' to prevent it. We need to offer an alternative solution: Laws and policies should - ideally - support a shared ideal and/or value system, and not be a band-aid measure to control something we don't understand.
The issue of blame-shame-punishment is not unique to HIV/AIDS. Rape survivors have been blamed-shamed-punished by courts and the public for decades, because people seem to need an explanation of why things happen to people, that is controllable. For example, there is a belief that if we can pin-point that what a woman was wearing contributed to her being raped, then we can prevent rape by not wearing the same clothes. At the same time, this means that she was to blame. We feel safer, and blame-shame-punishment has occurred. The fact that rape is an act of violence, that the motivation for rape has nothing to do with sex, age, or what someone wears, and has instead got to do with the need to express power and dominance due to deep-seated inadequacy, is ignored in this blame-shame-punishment of the rape survivor.
So where do we begin in the process of eliminating blame-shame-punishment?
2.2.2 COUNTER-ACTIVE MEASURES
We would imagine that the first place to look is why we seem to need this process, in terms of maintaining a sense of coherence in our world-view. In other words, we all need to be able to understand how things work in our world, in terms of cause-and-affect, so that we can do what needs to be done, and take responsibility for what we do. We simply cannot allow entropy (decline of order into chaos) to happen - it is in our nature to create greater order, not less. The exception is when a system is so dysfunctional that we need to destroy it because it cannot be rehabilitated. However, even this destruction is viewed as a means to an end, with the end being a more ordered and functional system (defined according to some belief or the other). This is how wars are justified.
184.108.40.206 Acknowledge that individuals have the power to choose to refrain from discrimination, as opposed to placing all power to socialization, and thus removing individual responsibility.
Our legal systems represent how we attempt to define and structure cause-and-effect and responsibility in our behaviors. Prior to the 1960's, the emphasis was upon individual 'blame'. There was little scope for mitigating circumstances. Then, with the advent of Behaviorism (a school of psychological theory that basically said that the only thing that was 'real', was behavior - thoughts were irrelevant), social influences (conditioning) rose to the fore, and we started to examine how a person's childhood influenced later behavior. This continued for many years, and reached a climax in a famous case where the defense lawyer persuaded the jury that a murderer had no option - based upon his childhood influences - but to murder the victim. In other words, the murderer had no free will - everything was determined through socialization. The judge agreed, but with a very important twist: If this was true, then society was to 'blame'. As the jury was the representative of society, he sent the jury to prison! As you can imagine, people - especially juries - were a little more careful about placing the 'blame' entirely on external influences.
220.127.116.11 Encourage/challenge organized religion to not only examine their emphasis on blame-shame-punishment (versus compassion), but also to do so actively and publicly.
It is probably a good time to introduce religion at this point, as the various religions of the world have had a fundamental and profound influence in the understanding of 'blame', what causes 'bad' things to happen, and how we should respond to this. However, when you add religion to sex (and HIV is after all a sexually-transmitted disease for most people in the developing world), you get a rather heated debate that is rarely rational. If we may summarize:
- Sex is 'bad' and punishable unless sanctioned by the representative of the religion (i.e., marriage); Therefore, HIV/AIDS is somehow a punishment for some or other sexual 'sin'; "You see - we told you so!" Therefore, HIV/AIDS is viewed as the physical proof of 'sinful' sexual behavior. So why should this matter?
- It matters because people want to go to Heaven. For many people, peace, joy, and fulfillment are not possible in their physical circumstances, nor can they see this as being potentially possible. So they don't try to get it 'here', and they seek it 'there', with 'there' being in Heaven. And guess who controls the security access codes to Heaven? Yes, the moral authorities - the same ones who say sex is a sin, and HIV/AIDS is proof of sin.
We need to make it abundantly clear that we are fully aware of the incredible
work and compassion displayed by many people from all religions, including in the area of HIV/AIDS. It has been our observation that these people focus their values and beliefs upon love, compassion, forgiveness, and that they do not place much energy or time on blame-shame-punishment. They are too busy making a difference to engage in dehumanizing activities.
The root of value-based blame-shame-punishment is fear - fear of being worthy enough to be accepted and loved. This applies not only to their relationship with God, but also to other people.
A good friend - and Methodist Minister - refers to the emphasis upon blame-shame-punishment in dealing with people living with HIV as 'Victim Theology'. He suggests that we start to focus upon a theology of self-worth, love and compassion. For those that find that inconceivable, it is not too difficult: Historically, theologians have selected segments of text to support the prevailing power focus, such as males being superior to females. Text that contradicted such preferences was de-emphasized as being of only 'historical' relevance. For example, most of the 'abominations' in the Old Testament were discarded as being of 'historical' interest only, except for one or two which supported the interests of the prevailing power elite.
However, this is not a discussion on religion, and the purpose of the above is to illustrate the pliability of religious dogma according to the priorities of those who purport to represent such values and dogma.
We cannot ignore the reality that the majority of the population in the developing world has a strong and enduring religious value system, whether this is Muslim, Christian, or traditional animist. We also cannot ignore the fact that these systems of belief have a powerful influence on stigmatization, including internal stigmatization by those infected.
To ignore this reality, we not only ignore probably one of the key areas to deal with stigma, but we also set aside one of the most widespread resource infrastructures in dealing with the consequences of HIV/AIDS, such as home-based care, caring for AIDS orphans, prevention, and a myriad of other issues.
18.104.22.168 Encourage/challenge politicians and other leaders to be conscious of how they reinforce stigma through their words and actions, which contradict non-discriminatory policies and principles.
Another important area is within the political arena: Politicians need to spend less time reacting to each other, and spend more time creating a vision for a better world, and then earn their keep by making this a reality. It is perhaps time that we start asking ourselves why people do not resist death too strongly, and why people are so willing to accept blame and shame for merely having a virus in their blood. Leaders need to engage the task of stigma directly, by simple actions such as publicly embracing those living with HIV.
Not too many years ago, the leader of a political party in Gauteng died of what was rumored to be AIDS. The party leadership issued a statement denying this. However, what was shocking was that the reason they wanted these rumors to end was that it 'shamed' the party and the family of the deceased. The same party strongly advocates against stigma.
This is not too dissimilar to a charity event where a woman living with HIV publicly announced her status to the crowd, in an effort to overcome stigma in the community. The political representative of the area had wonderful words of encouragement to the crowd, congratulating her on being so brave. As he embraced her - on the stage - he whispered into her ear "How could you shame you family and community like this?!"
These examples illustrate the often-superficial platitudes and attitudes of leaders in our countries. They have not dealt with the core beliefs they hold.
2.3 BELIEF 3: "It's the way we do things" (Culture and tradition should not be questioned).
We were doing a talk a while ago, and during the question-and-answer section a woman - who had taken a cell-phone call while we were speaking earlier - raised her hand and said "It is not in my culture to discuss sex with my children". Our response was: "It's also not in your culture to carry a cell phone, but you've adapted to that with great ease."
The previous story illustrates an important quality of culture: It's about convenience and increased survivability (functionality). At first, there is skepticism, but if it works, it soon becomes 'what we do'.
Culture and traditions include a wide range of behaviors and activities, including language, dance, rituals, how we deal with illness and death, and the regulation of relationships, gender roles, and sexuality.
In recent years there has been an enormous amount of energy directed at protecting 'culture'. This is based upon the value of respecting diversity and differences. However, protecting a culture or tradition is a two-edged sword: On the one hand you preserve the unique qualities of a group of people, and on the other hand such protection can reduce the flexibility of that group in the face of change, thus reducing their ability to survive.
Historically, there is no such thing as a culture or tradition that arrived spontaneously, and endured unchanged. This is simply because cultures and traditions were born out of specific situational necessities, and endure only as long as that necessity continues. At the very moment that the need changes, the tradition ceases to fulfill any survival function. However, this does not mean that the behaviour ceases - often, we forget why we were doing it in the first place, so we simply continue anyway.
It is also important to realize that every tradition serves specific groups more than others, and will be protected by those whom it serves most. It is at this point that self-interest interferes with the interests of the group as a whole. Gender roles are a case in point: Women stand to gain a great deal from equality in practical reality, while men perceive this as a real threat to their power. When resources are scarce, this becomes very difficult, as there is not a lot to share equally.
Cultural traditions and norms are also comforting: They provide a sense of identity and belonging. When situations become difficult, it is reassuring to know that you know "what people like us do" in such circumstances, even if the methods are no longer effective.
The harsh reality is that you cannot effectively protect a culture or tradition. This is guaranteed to cause harm to the people it is supposed to serve, in the long term. The reason is simple: Change is the only guaranteed reality, and this requires adaptation and flexibility. Languages come and go, as do all other cultural behaviors and norms. The way that they change is revealing: When a norm is no longer functional, those that hold on to it die out, while those that change, survive. The only way to allow some language or tradition to survive is to incorporate it into a newer tradition or language.
The direction of this 'survival of the fittest' is not always obvious or anticipated, and people find ways to adapt in unique ways, thus ensuring continued diversity. What is important to note about this 'survival of the fittest' process, is that it is geared to the survival of the group, not the individual. People do what they have to do to survive - collectively - according to their resources and situation. To assume that a group different from yours must do it your way, is calledethnocentricity.
Social responses to HIV/AIDS prevention strategies in the developing world are a classic example of this. This example will no doubt will stir up controversy, which is an excellent manner to force unspoken beliefs to surface for identification and clarification. We present this explanation for the failure of specific types of prevention methods as the basis for debate, not as a definitive 'answer' or point of view:
The developed world believes that people in developing countries have the same system of survival: In the more affluent developed world, the sick, the young and the elderly can fall back on the welfare system, funded by a taxed society. In the developed world, the priority is therefore to ensure economic growth, employment, and consequent adequate tax-derived funds to ensure that the support system continues.
However, in the developing world, this type of economic welfare 'safety net' largely does not exist. Instead, the family - nuclear and extended - provides such support. In the developing world, the continuity of the support system depends entirely upon procreation, to ensure that there are enough children to provide support when you get old or ill.
It is therefore - according to a developed world perspective and realities - logical and 'factual' that condoms will (and should be) the primary form of HIV prevention, as it not only does not interfere with the (economic) support system - it is relatively cheap - but it also ensures that the system continues into the future, by reducing the (costly) illness burden on the system. You will notice, for example, that in most debates and discussions regarding medical treatment or prevention strategies, that there is a great deal of focus upon the economic costs of the proposed options.
However, from a developing world perspective, condoms directly prevent the continuity of their support system - children and procreation - by preventing conception. The greatest obstacle to convincing people to wearing condoms in the developing world is "How can I have children if I always wear a condom?"Good question … find a workable answer to that one, and we may have a solution to ensuring the continuity of the support system, and preventing HIV infection. Until we solve that dilemma, people are going to have sex without a condom. Exceptions to this - and research into condom use suggests this is the case - are sexual encounters with non-procreational intentions (youth and commercial sex workers). In these groups, condom promotions have had great success. However in sexual interactions with a procreational intention (e.g., committed or married couples), condom promotions have had little impact.
For those who dispute this - and we are sure there will be many - we suggest that you look at the Ugandan experience, often touted as an example of how the other forms of prevention (be faithful to your partner, delayed onset of sexual activity for young people) can produce effective results. In Uganda, condoms were a minor component of the prevention strategies that led to declines in infections.
Before the outrage begins, let us state clearly that we believe that condoms are indeed a critical component of prevention, especially in high-risk areas such as commercial sex and pre-marital relationships. However, based upon the evidence, we have not seen condoms make a dent in infection rates anywhere else.This is not because we do not support condom usage - it is because many people won't use them, no matter how much we have supported their use or made them available. Perhaps condoms would be viewed as a viable prevention method if economic and social systems were different? We don't know.
However, this discussion concerns stigma, not prevention of HIV infection. The point of the above example is that we often make fundamental assumptions without thinking about them.
2.3.2 COUNTER-ACTIVE MEASURES
22.214.171.124 Tell the truth
One of the only forces that we can rely upon to encourage communities to adapt to the new realities of HIV/AIDS, is a full awareness of those realities. However, we are not referring to the bland intellectual type of awareness that most people associate with 'awareness'. Awareness does not come from statistics or posters.
Instead, we refer to direct awareness of the realities of HIV/AIDS, including all the gory details. Social change unfortunately is usually motivated by pain. For as long as society can hide the pain, change tends not to happen.
Many countries missed a critical opportunity to promote prevention in the early years of the epidemic, because the leadership was afraid of spreading panic. They were afraid of the economic consequences (e.g., investor confidence, tourism) if the general public saw what AIDS really looked like. For this reason, certain public broadcasting stations had a policy of not showing any person with AIDS-related illness. It was kept hidden and sanitized. They reckoned that they convince the public to change their behavior through reason and information alone. This failed, predictably.
Communities will continue to stigmatize those infected until such time as it can no longer function without those infected. In other words, until there are simply too many people to hide away, and until those infected - and others knowing that that they are infected - are filling important and valuable roles in society.
This is not a theoretical concept: In almost every country affected by HIV/AIDS, stigma has endured until there were simply too many people infected or ill to ignore. Then, when the realities are so huge, the society undergoes a 'stigma burn-out', which is a process of giving up on trying to deny what is really going on.
How can we accelerate this 'stigma burnout'? I.e., how can we short-circuit this process of denial, so that the stigma ends sooner? One of the primary methods is for people to see and know the truth of what is going on. This means greater emphasis upon HIV testing, and greater public profiling of people living with HIV, both healthily and with illness - the whole range.
126.96.36.199 Increase efforts to get people tested, and make the benefits of knowing your status explicitly clear
We need to increase our capacity for HIV testing, and we need to strengthen the benefits of getting tested (discussed earlier). As things stand right now, a tiny fraction of those infected actually know about it, and with the current facilities, this is not going to change much.
Once we have a more realistic view of HIV/AIDS - from a public perspective - we need to allow various cultures to adapt to these realities, as they have done in the past. Yes, there will be resistance, but on a whole people will find solutions. None of this can happen if they do not know - see, hear, touch - the realities that threaten their survival.
People do not respond to abstracts, nor to statistics. They respond to real-life reality, which affects them directly.
In conclusion, stigma is in essence one of two things: The onset of a Dark Age of fear, pain and social fragmentation, or the opportunity for a Renaissance - a revival of a new social order, based upon greater compassion and understanding. The only way to head off this potential 21st century Dark Age is the open questioning of what we hold to be true in our cultures.
In order for us to be effective, we must challenge people's core beliefs. We have spent 20 years trying to fix everything except what really needs to be fixed. We are addressing everything except our core beliefs, and yet it is these very beliefs that are creating the problem.
There is only one solution, if we hope to make any difference at the social level. We must challenge people's beliefs. When we can do this, we can then make a real impact on stigma, discrimination, gender inequity and a range of other social issues. What are those values we want to share? How do we want to live? Unlike past generations, we cannot say "For my children I want …" If we wait and delay, it will be too late. This time, we need to start with "For me, and my children, I want …"
It is small comfort to those infected who have been stigmatized to know that there is a larger social process which is occurring, and that at some point things change for the better. However, this is how it happens in every society. Therefore, continue to challenge the fear and ignorance - fight with understanding, knowing that you are helping to accelerate the larger process. However, always remember that the change starts with you - your beliefs about yourself. Question these beliefs, and then you have earned the right to challenge the beliefs of others.
Stigma and HIV/AIDS Intervention Structures by David Patient & Neil Orr (30/06/2004)
INTRODUCTION: FUNCTIONS VERSUS STRUCTURES
To what extent is the method of delivery of HIV and AIDS services contributing to the perpetuation of stigma?
If stigma is a set of 'isolate and separate' perceptions and behaviours, then are we not perpetuating stigma by having 'separate' structures such as HIV policies, HIV programs, HIV Champions, HIV peer educators, HIV NGO's, public officials with HIV portfolios, HIV awareness campaigns, HIV condom distribution, ABC, and AIDS day talks. We even have AIDS orphans! Don't get us wrong: These services are critical to our efforts to deal with HIV and AIDS.
Instead, what we are asking is: To what extent are we confusing the need for these functions, versus these potentially stigma-reinforcing structures? We fail to recognise that we are perpetuating a state of separation by setting HIV/AIDS on its own platform, particularly in delivered interventions. We unintentionally isolate those living with the disease in our desire to help and do the right thing. Is it not time to normalize HIV/AIDS by striving to include these HIV AIDS functions within existing health, policy and service structures?
Let us use VCT sites (i.e., specific testing offices) as an example: Let's just walk through this process. First, you need to enter the VCT office (or building). Anyone in the vicinity has seen you do so, and will probably speculate to the reasons. You sit in a waiting room with other nervous people, each knowing full well why the other is there. After the counselling and testing process, you receive your HIV status. You then either walk out with a big grin, or in shock or tears, right back into the waiting room, with everyone looking at you, reading your face and back out on the street. When a person walks out of a VCT site crying it is a pretty clear indication of that persons' HIV status.
This issue of structural stigmatisation has emerged from two sectors: The first group is typically non-HIV-infected, who have expressed resentment at the 'special' attention given to HIV and AIDS. It appears there is a backlash to the ongoing efforts to deal with HIV and AIDS. Questions raised are: What is the difference between an 'ordinary' orphan and an 'AIDS' orphan? Don't they deserve the same care and attention? Why are there no equal efforts for cancer, TB, malaria, high blood pressure, and diabetes? Do they have a point?
The second group is the infected and affected themselves: Often, we hear of people either refusing to enter HIV AIDS structures, simply because this forces them to disclose their condition, by virtue of their presence at such structures. There is no privacy in such situations. The standing conundrum in HIV/AIDS awareness campaigns is: How do we get people to attend? If you attend, you are concerned. Then people wonder why you are concerned. The stigma begins.
MAINSTREAMING HIV/AIDS FUNCTIONS
If there were no solutions, we would have no problem with simply ploughing ahead, doing the best we can, hoping that the benefits of helping those infected and affected outweighs the price they pay, in terms of stigma. However, there are alternatives, which - quite frankly - make more sense, from a logistical, cost, and capacity perspective:
If HIV was mainstreamed - at least in terms of its social marketing and delivery structures - this normalization would in and of itself start to address stigma. Why not incorporate HIV within the broader context of chronic and life threatening illnesses? For example: In the VCT setting, if a person is in a 'wellness/health' clinic, where people with all sort of illnesses are being treated, and they are there for their HIV test, then nobody in the waiting room can speculate as they could be there for any number of reasons and tests. At the very least, have a back exit out of the building so that if a person does receive life altering news, like their HIV status, that they can exit without having to walk back into the waiting area, for everyone to see their emotional reaction.
SPECIALIST PERSONNEL VERSUS EXPANDING EXISTING CAPACITY
Are we being effective in maximising capacity by creating specialist counsellors, or do we simply need to increase the number of health personnel, and capacitate them all to counsel and test for HIV? Do we need to create specific HIV AIDS policies, or do we simply need to re-examine existing policies concerning potentially life-limiting illnesses? Can we increase the community coverage of awareness and health-promoting behaviours by expanding the knowledge and skills of peer educators to include other health concerns, and let them deal with a wider range of community issues? Quite bluntly, is it not more effective to remove the term 'HIV AIDS' from awareness efforts, and rather include it as one of a range of modules in 'Wellness' efforts, where other issues include hepatitis, malaria, TB, breast-feeding, nutrition, and other common concerns? How many more people would we reach this way? We suspect that the 'footprint' of such Wellness educators would be much wider.
Why is business not investing in the over-all health of its workforce and their communities? Why is business trying to replicate what already exists and not putting its money into capacitation of what structures already exist? When an employee gets ill, more often than not, they will seek support within their community long before they will step forward and seek help from an employee assistance program, especially if they know or suspect their HIV status. There is a significant portion of employees who would rather die without help and support than be identified as HIV-positive.
WORKING FROM THE KNOWN TO THE UNKNOWN
One of the problems with HIV is the fact that you cannot see it. It is, for many people, an intangible, except as a symbol on a test result. However, AIDS is quite real: We know what it looks like - it looks like TB, cancer, skin conditions, pneumonia, wasting, diarrhoea, and so forth. The reason we know what these look like, is that they have been around for a long time. The only difference now is that we see it more in people who normally did not get these serious illnesses. Therefore, when we focus upon identifying and dealing with such illnesses - and make it clear that HIV may be a key factor in it's presence and treatment - HIV becomes relevant to those who would normally not be concerned. When we try to deal with HIV as a separate 'special' entity, we are working from the unknown (perceptually) to the known (AIDS). However, when we focus upon wellness (and existing structures), we are working from the known (various illnesses and health concerns that affect anyone and are familiar to them) to the unknown (HIV).
COMMUNITY INTERVENTIONS: 'HIV' VERSUS 'WELLNESS'
Our work has taken us all over Africa and when we do an HIV program, few people show up unless they are within the HIV network (HIV industry: ASO's, NGO's, CBO's and FBO's). Yet when we do community wellness training - which includes HIV and AIDS, but is not the sole focus - we more often than not run out of space for the amount of attendees. When we do the same process where HIV is the stated focus, we struggle to fill the room with members of the broader community.
What have we learned from this? Quite simply, we need to mainstream HIV and AIDS as one of a range of health concerns, at least in its delivery aspects. Yes, we plan and strategise as normal. We know full well that we are plugging an HIV intervention. However, we simply market it differently, as wellness. Is this deceptive? No: Every single component of health - nutrition, immune strengthening, hygiene, intestinal parasites, regular medical check-ups, breast-feeding issues, identifying and preventing common infections - are all of primary concern to those infected. However, they are equally important to the uninfected, and affected. Most people want health and wellness. It is a simple matter of starting where people are, and not where we need them to be.
Our results? On day one or two of a five-day program, we ask who has been tested and who is open to being tested and a handful of people put their hands up. Once we have covered health, food and nutritional security, explained how improving immune function affects over all health and what people can do to ensure effective immune function against all diseases (and how to live with HIV, Cancer, etc) everything changes. When we ask who would be willing to get tested now for HIV, most hands in the room go up. When placed within a wellness context, people see the reasons why they need to get tested. But if we pitched up, did a few hours on 'know your status' few if any would come forward for testing.
So our approach is to work within wellness, which includes - but is not exclusive to - HIV, a broader context of health and we are getting amazing results. By downplaying HIV and up-scaling overall health and wellness, we achieve more than we ever did making HIV a stand alone process. If we keep doing what we have always done, we'll keep getting the same results. If we want different results, we have to change what we are doing.
The Ethics of Empowerment by Neil Orr & David Patient
There are many methods to produce change in the people around you. Some people and organizations are highly skilled at this - sales people and advertising agencies are examples of this. However, in the process of facilitating change, we need to consider whether the changes we are producing are ethical. Without a set of ethics - values that we strive to uphold - all we are doing is training you to be manipulative, and this can be harmful to others, and to your relationships with people. There are always consequences for unethical behaviours.
It is the experience of many peer educators and development workers that you do not simply enter a community, transfer the apparently 'missing' skill or resource, and walk away, job well done. Often, such a naive approach results in rejection and disillusionment. There are many factors that determine receptivity and the appropriateness and success of such transferals of resources. The following are some of the most important considerations of factors that help or hinder such processes, which are typically ignored due to the fact that they are not visible, but rather form part of the fabric of the value and identity systems of communities:
1.1 Who are you? What do you want? What is important in life?
In all communities, the first consideration of empowerment is the fundamental need for an identity: Who we are, what we want, and what we value. It is much more difficult to change a value system than it is to identify such values, and work within them. This is achieved by asking members of the community what they really want, and what their primary values and sense of identity are. However, it is a common experience that the most fundamental beliefs and desires of a community are not always conscious or readily accessible. Therefore, specific methods are used to allow such desires and beliefs to become conscious.
1.2 Why do you deserve to live?
The second consideration in community empowerment is the strength of the conscious value and appreciation of life itself. Although it is commonly assumed that 'everyone wants to live', this is in fact not true. For many people, life is painful, hard, and sometimes plain boring. War, AIDS, malaria, political upheaval, and droughts have created a situation where life itself is not valued, and many people do not have a strong and compelling urge to protect their lives, and do what it takes to improve their lives. It is often a shock for many people to discover how little they truly value their lives, and this is the beginning of the process of change for many.
1.3 What do you hope for?
The third consideration is the presence (or absence) of the community's desire (or dream) for a potential future where specific desires and needs are met, and values respected. Although this may appear strange to development workers and planners who are goal-focused, many traditional cultures exist within a paradigm where the adherence to specific ways of being leads to achievement of needs. Goals are defined by these ways of being. When environmental factors change, it is often very difficult to individually or collectively 'dream' of future situations that deviate from traditional ways of being. Instead, a sense of hopelessness sets in, particularly when traditional ways of being are failing to fulfill basic needs. A classic example would be how the traditional role of women defines a woman's skill to dream or set goals for herself, versus having the future defined by a man.
We have developed specific methods to achieve this, which are rooted in a hybrid mixture of traditional rituals and Neuro Linguistic Programming (NLP). Application of the methods are simple, and highly effective, as demonstrated in Positive Living programs in Mozambique, South Africa, Kenya, Tanzania, Eritrea, Lesotho and Swaziland, to name a few countries where this technology has been successfully applied. The fundamental objective is to resurrect a desirable future in the community, something to work towards. Once this is in place, the subsequent empowerment methods (food security, health and wellness methods, etc) have a context which motivates people to implement.
With these first three considerations - identity, value of life, and presence of a desired future - the dynamics of empowerment change fundamentally, for individuals and groups. When the first three elements are in place, there is a context - a 'why' - for subsequent empowerment projects to attract involvement, and remain sustained.
1.4 What do you have? What do you need?
The fourth consideration in community empowerment differs from community to community, and involves resources - access to water, food, education, medical services, and basic amenities. Clearly, the specifics depend upon what the community has stated it wants and needs. It is worth noting that, in the absence of the first three factors (identity, future dream, value of life), even existing resources are frequently not utilized to their full potential. Simplistically, resources need to be place within a psychosocial vessel of values, goals and identity. Without such a vessel, they usually dissipate into the barren sand of good intentions.
It should be obvious that, prior to any empowerment (i.e., the first three considerations), there needs to be a detailed factual analysis of the resources available to the specific community. There is, for example, no point in utilizing the tools to encourage people to get tested for HIV (or take malaria prophylaxis), when the physical resources for such actions are simply not available. Therefore, empowerment - in the sense that we are describing - needs to be an integrated approach, which links with existing programs and facilities.
2. The Role Players in Empowerment
Just as the communities you seek to serve have a sense of identity and a value system that define their behaviour and what they consider desirable and obtainable, so do you. The forces that form the community's realities apply to you as well, leading you to view things as more or less desirable, right/wrong, achievable, and not achievable. This can - and does - have a profound impact upon the work you do. Therefore, it is critical for you to get clear on what your influences are, so that you can decide whether they serve the work you do or not.
In any given empowerment situation, there are at least three groups of players:
- You (I)
- The person(s) you seek to empower (YOU)
- The gatekeepers who influence what is considered possible or feasible. We refer to these as 'THEY', as in the statement 'They will not let me …'
As a point of clarity: 'They' can refer to anyone. It can refer to the people who provide funding, the tribal leader, politicians, parents, ancestors, priests, religious leaders, teachers, your boss … anyone who has a say in how the empowerment process operates.
3. The Ethics of Empowerment
There is no such thing as being neutral: Whether we like it or not, we affect the world by virtue of our personal histories and preferences, and also the culture we were raised in.
We see, hear and respond to the world according to what we are capable of seeing, hearing and responding to. For example: A medically-trained professional would tend to view an emotional imbalance as the result of a chemical imbalance, and thus the solution would focus upon restoring that chemical imbalance. However, a psychologist would view the chemical imbalance as the result of an emotional imbalance, and seek to address the emotional issue. In the same way, a government (or development agency) would view small-scale farmers as having the potential to form the back-bone of a viable export economy. However, that same small-scale farmer may view his (or her) activities as purely focused upon supplying his or her family with food. Therefore, these two agents (government and the farmer) may view agricultural development very differently, and may express completely different needs and priorities.
From our point of view, the upholding of the ethic of neutrality (i.e., striving to be objective) is not only impossible, it is also counter-productive. However, in the absence of a more workable ethic, the ethic of objectivity is viewed as sacred. This prevents us from engaging in the development of a more viable ethic, namely the ethics of relationship, which we call the ethics of empowerment.
An ethic is a belief or value that you strive to uphold. For example, a doctor takes an oath (promise) to do no harm when working with patients. Counselors agree to protect the confidentiality of all clients. Politicians make promises to do certain things if elected. In essence, we cannot speak of valuing life (our own, and those of others) until we define what we believe is most important about that life. The relevant focus concept for an ethic of relationship is values.
Value systems vary from community to community. We are also quite prone to trying to impose our values upon others. Is this ethical? Which leads us to the question: What are 'ethics', and why should we bother with them at all? Why don't we simply do what we believe to be right, and when others differ, force them to comply - after all, don't we know better than they do? In other words, aren't some people more qualified to know what is good and bad?
This type of thinking - often heard, or at least felt - by many 'helpers' of others, needs to be confronted directly, as it undermines the very nature of what empowerment truly is: Facilitating the emergence of the inherent power contained in 'them'.
An ethic is a value system that directs behaviours, based upon what we believe to be fundamentally true about ourselves, others, and the world (i.e., our world-view, or paradigm). In essence, an ethic is a set of norms (what to do, and not do) based upon what we believe our life truly means. Although we are often not aware of our background ethical system, it is useful - essential - to be aware that it exists, as it has a profound impact upon what we do, why we do it, and how we do it.
Usually, the basic world-view we operate from is the same as the one we were raised in, educated in, and work in. We therefore typically conclude that it is 'the only way', and other paradigms are defective, and need to be changed to fit ours. After all, if I have figured out what to do to be happy in my world, all that other people need to do is to agree to see the world my way, and then do what I do, and they will be happy too! This is well-intentioned approach, but not necessarily effective.
The legal and justice system of a specific society is often a clear indicator of the paradigm and ethic in that society: 'An eye for an eye', or 'rehabilitation'? Is criminal behaviour caused by external forces (e.g., the upbringing of the child), or evil spirits, or a conscious choice (or lack of will) of the individual? Is 'crime' something that is defined in terms of harm to property and person, or does it include perceived harm to intangible things such as morality, beliefs, norms (e.g., the role of women) or traditions?
How do we know when to respond to a situation? I.e., when do we know that something is going on that needs our input? In our personal paradigm, we are usually quite clear on the ethics. However, when we deal with communities with a different world-view, how can we tell the difference between interfering and empowering?
To follow are a few basic ethical guidelines that we have found to be effective for us, as they protect the dignity and choice of those we seek to empower.
EMPOWERMENT ETHIC 1:
SEEK TO INCREASE CONSCIOUS CHOICE
We believe that the only way we can truly protect and respect the dignity and inherent value of life, is to honour and protect the conscious choices made by others. I.e., if someone does not want what we have to offer, we respect that. If someone does not recognize their choice in a matter, we maintain our view that they have that choice. Without this belief, we cannot speak of genuine empowerment (i.e., recognizing and facilitating the power within to emerge, so that the other person is enhanced - self-sustaining, more able to control his/her world) through the interaction, versus becoming dependant).
However, this is not as simple as it sounds. Due to a variety of reasons (events and socialization), a person or group may not be consciously aware of their power and choices. Therefore, it is sometimes necessary to first facilitate conscious awareness of choice before seeking to enquire what that choice is. For example: If a person is deeply depressed and wants to end his or her life, is he or she operating from conscious choice? Usually, they are not. Nor, would we argue, do young children (partially, at least), mentally challenged people, or those in semi- or fully unconscious states.
EMPOWERMENT ETHIC 2:
RESPECT THEIR MAP OF THE WORLD
Every person - including you - has a 'map of the world'. This refers to the way you see the world, your resources (past and present), how your world actually is (resources), what you value, believe, language, religion, relationships, and so forth. This has been referred to previously as your paradigm.
One of the basic premises - or values - of empowerment is to seek to understand and respect the other person's (or group's) map of the world. This also means making an effort to work from within their map of the world. This is where the Memes become an important tool in how you engage in empowerment with a specific community.
EMPOWERMENT ETHIC 3:
PEOPLE ARE DOING THE BEST THEY KNOW HOW,
WITH THE RESOURCES THAT THEY HAVE AVAILABLE
This is not always an easy ethic to hold, as some people do some strange and harmful things. However, when you consider that 'resources' include internal beliefs, feelings, and sometimes the lack of internal resources (confidence, feeling safe, loved, etc), this ethic makes sense. It also provides an avenue or way or thinking that seeks to uncover what resources led to the behaviour, and therefore the possibility of changing behaviour through modification of resources. In the case of criminal behaviour - usually the area we get stuck on regarding this ethic - this means that justice (i.e., trial, sentence, imprisonment) is still appropriate. However, instead of doing this to simply remove the person from society, the true purpose of the penal system becomes important: Rehabilitation (i.e., internal resource empowerment).
EMPOWERMENT ETHIC 4:
PEOPLE ARE NOT THEIR BEHAVIOURS
This means that we do not seek to judge who people are. Instead, we seek to facilitate changes in what they do, if they choose to change.
EMPOWERMENT ETHIC 5:
TRUE EMPOWERMENT INCREASES WHOLENESS
(EMPOWERMENT NEEDS TO BE SUSTAINABLE AND ECOLOGICAL)
This is an important ethic, as it focuses our attention upon sustainable empowerment. It is true that we can facilitate change in specific people, in specific areas of their lives. However, can these changes be sustained (by them) afterwards? What are the consequences for the individual and/or community? It is easy to fall into anger on certain problems, and seek dramatic change. However, it is important to always consider the whole person or community - what are the consequences? It is sometimes necessary to step out of our map of the world, examine the situation from their map of the world, and seek ways to empower that work for them, with due consideration of the consequences. Classic example: Empower a woman to say 'No' to sex without a condom, without consideration of what will happen as a result. Wholeness means that the husband is included in the empowerment process as a 'THEY' position.
EMPOWERMENT ETHIC 6:
THERE IS NO FAILURE, ONLY FEEDBACK
This ethic or principle can be difficult, especially when you have tried hard to achieve something, and not obtained it. However, when you view such results as feedback - i.e., important information regarding how you are doing in the process - there is no such thing as failure, only 'incomplete success'. With this principle in mind, we examine the results of our efforts, and adjust what needs to be adjusted, and we carry on.
EMPOWERMENT ETHIC 7:
THE MEANING OF COMMUNICATION IS THE RESPONSE YOU GET
In many ways, this principle brings together many of the other ethics. If you communicate, then the response (or lack thereof) is simply a reflection of your communication. If you communicate differently, you will get different results. Examine their map of the world again.
If you keep on doing what you have always done, you will get the same results. You cannot expect people to change, when you are not willing to consider changing yourself, and the way you communicate.
The Law of Requisite Variety (an evolutionary principle) says that: The system or person with the most flexibility of behaviour (and this includes communication) will have the most influence or power within that system.
Therefore, your willingness to be flexible will directly determine how effective you are in empowering the communities you seek to empower.
4. Rights & Responsibilities
The ethics of empowerment - as listed in previous paragraphs - inevitably lead to a specific area of conflict and confusion: What is the 'right' thing to do when the values and choices of one person (or group) conflict with another person's (or group)? Often, development workers face this dilemma when they witness one person harming another, in the name of 'that's what we do - it's my right'. Often, such situations (e.g., abuse of children or women) evoke great emotions, even from the most neutral observer, and justifiably so. It is in situations like this that our ethics are most clearly challenged, and the desire to isolate, retaliate in kind, control and punish emerges. What do we do in situations like this? How does 'empowerment' operate in such situations?
First, we ask ourselves: Does this ethic serves our needs? Does it allow us to live with dignity, and does it serve our relationships?
Second, we examine our ethics closely. We ask ourselves what the ethics means, and we explore the depths of meaning. We debate, discuss, and interpret, collectively. We form agreements of what the ethic means.
Finally, we ask ourselves what the ethic requires us to do. Sometimes, this is obvious, and other times it is a challenge to evolve and develop new skills and resources.
5. Conclusions about ethics
Ethics are not mere 'rules'. Instead, ethics are values that we strive to live up to. As a result, they invoke evolution and development, personally and socially.
The question is: What set of values are most effective and efficient in guiding our efforts to empower others (and ourselves) in the long-term? I.e., what values most closely matches the hidden potential contained in us all, and evokes that potential to emerge? We believe that the ethics listed in this document go a long way to guiding us in the release of such potential.
The Gift of AIDS by David Patient
For many people reading this, trying to find any gift in the AIDS experience may seem difficult, if not impossible. However, in the seventeen years that I have been part of the HIV reality I have obtained many gifts from this epidemic. I would like to share these gifts with you in the hopes that it will mobilise you into action, or sustain your efforts. Life gives us gifts in strange packages. At first we are often only aware of what we are losing. It is only over time that we can see what we have gained. Here are the gifts that I have received from AIDS:
THE GIFT OF INTIMACY
I have walked with many frighten souls on their journey through AIDS. Many of these journeys have been right to the gates of death, where they have walked through and I have been left on this side. To be there at the end of this journey for another, assuming their abilities as they lose them, is a humbling experience for the most hardened of people, including myself. To have them choose me as their guide into death, where all facades are dropped and nothing but pure honesty exists between us, is the gift of true intimacy.
It is God in action, totally non-judgmental, and with no need to fix a situation that isn't broken. It is about simply being there for the other person with no need to control the outcome, yet doing everything within my power to ensure their illness and eventual death will be with dignity. Countless people have entered my life as a direct result of their diagnosis, or mine. The influences we have had on each other outweigh the demands put on our relationship - the pain and suffering, loss of dignity, and often the loss of faculties - as we touched the face of God together. It is through the intimacy of dying that I have learned about vulnerability and opening up my heart to a greater acceptance of myself and others.
'Alas for those who cannot sing but die with all the music in them.'
As I go on living with AIDS I want to keep singing and hope that friends will continue to hear meeven when the song is a sad one. (J.)
THE GIFT OF SURRENDER
Many times during my illness - and those of people I have supported - I have had to simply let go of my need to control the outcome. Considering my high need for control, this was no easy accomplishment. To totally relinquish control for me equated to trusting the process that was unfolding in front of me. It is a behaviour I have had to learn, as it wasn't inherent in my coping styles. I had to learn to just be there for someone who was dying, simply loving and supporting their process without judging it or making it wrong or bad. I had to confront the reality that there is a much bigger plan acting itself out, regardless of my illusion of being able to control what was happening. I had to accept reality as it is, and not the way I feel it could, should or ought to be. For me, surrender became an act of having enough control to let go of my need to control. In time, I learned that there was nothing 'wrong' with the dying person's process. I was simply grateful for the privilege to be there as the Plan moved forward in it's mysterious way.
I am grateful for the time I have spent with you. I am sad that I will have to leave you someday soon.
Thank you Ron.
Thank you Mom and Dad.
I love you. (Pat)
THE GIFT OF COMMUNITY
When AIDS enters a society or group, it shatters relationships with fear and ignorance. However, as the old disappears, a new community arises. Those infected and affected gather together, to form a Chosen Community. They form support networks, caregiver agencies, underground treatment and medication smuggling networks and even meals on wheels. This takes time, but it happens. More importantly, relationships form beyond the fear, beyond the stigma, and are held together by care, respect, and love. Some friends and family remain, many leave. Those that remain do so because they choose to.
In time, this act of sharing begins to create an AIDS community, with people from all walks of life coming together to love and support one another. Suddenly race, language, religious beliefs and sexual orientation fell by the wayside. Relationships are forged across gaps that were once too large to navigate due to limited beliefs and opinions about 'those' people, which soon dissolve into an act of simply supporting one another. The gift of community grows out of a common cause for a need for a compassionate response to AIDS.
As a result, our sense of connectedness is expanded. You discover true relationship, true community, based upon humanity and compassion, not convenience, culture, religion or birth. We have all heard, many times, that we are all connected, and AIDS highlights this, and turns Sunday values into everyday reality and action. I am blessed to know who loves me, no matter where I have been, and what I have done. I have received the Gift of Community.
In the midst of illness, rejection, isolation and even death,- out of the darkness - not family, friends or lovers, but strangers loving, caring, giving of themselves- have renewed my faith and are my strength-I love you. (Roy G.)
THE GIFT OF SERVICE
Think of a time you have allowed someone to do something for you, with no expectation of returning the favour. At first it may have felt uncomfortable, or perhaps even unpleasant. However, when you allowed yourself to be supported by someone who was able to be there for you, how wonderful a gift it proved to be.
To give of oneself is God in action. It's not about money, time or effort. It is about feeling compassion and empathy for your fellow man, regardless of their race, gender, life style, culture, or religion. In service there is no 'Us and Them' - there is only WE.
I am not talking about self-sacrifice or martyrdom. True service comes from knowing that you have enough for yourself and for others. It is knowing that you are blessed with more than enough. It also means taking care of yourself, so that you remain filled with more than enough. You cannot give what you do not have.
Service is not about rescuing people. It is about empowering them, knowing that they may lack resources and skills. However, this does not take away from the fact that they are a child of God, no lesser and no greater than you. All they need is someone to believe in them so that they can see their own personal power, regardless of how long that may take. It often means seeing what they have not yet seen, namely that they have the power to change their lives, despite all evidence to the contrary. The gift of service merges giving and receiving into one single act of love. Receiving is giving and giving is receiving. The gift of service has opened me to a greater appreciation of our connectedness.
I am afraid that I may die alone.
What is even more frightening is that no one will care. (Ron)
THE GIFT OF WISDOM
Think of something you have learned because of your giving care to another human being. Wisdom is captured in the Serenity Prayer…' Lord, grant me the serenity to accepts the things I cannot change, the change the things I can and the wisdom to know the difference.' There is wisdom in knowing when to speak, and when to remain silent. There is profound wisdom in knowing when to touch and hold a hand, and when to allow the other person his or her privacy and aloneness.
Perhaps you have marveled at the miraculous complexity of the human body? The human body never lies. It tells you what it needs as long as you can detach from your own internal dialogue and remove the judgments keeping you stuck in a specific, and probably limiting, paradigm. Perhaps it is something about courage and endurance, about love and relationship, about ethics and values? Pause for a moment and think about how AIDS has brought you a wealth of wisdom. I have made my choice: I'm sitting tight until there's a cure.
Then as soon as a cure is found, I'm going to drop dead from the excitement.
THE GIFT OF PRESENCE
Presence is about being here and now - in this very moment. The Gift of Presence is found in those experiences where the intensity of the moment moved you so deeply that the past and future suddenly faded away and all of you responded, resonated with the power of that moment. When I am with someone who is dying, there is no future to ponder, and no past which needs to be considered. All that matters is that I am here, right now. There is great power and joy in just being here, right now. I have no need to delay telling the truth, and no need to postpone joy. This is the only moment I may have with this person, and with myself. In this moment, it is good to be alive.
Why is it only in death we can see the value of life? (A.M.P.)
THE GIFT OF MEANING
I have learned to step beyond the surface meanings of culture, religion, political beliefs, differences in beliefs, as a result of AIDS. It does not matter whether we have different beliefs. What matters is that we accept and respect each other.
Many of us, infected or affected came into this reality with many preconceived notions about people, cultures and beliefs, yet AIDS has forced us to confront these limitation and has expanded our acceptance of our fellow man, regardless as to whether we support the same beliefs or values. It has forced me to confront my need for seeking meaning by seeking only what is the same as myself trying to order my world according to categories of who is similar to me, and who is not. I have discovered that these categories have no substance, no meaning. Only compassion means something - we all feel pain and pleasure - we all seek to connect with someone or something - we all want to know that we made a difference - we are not separate.
One day people will not judge a person by the colour of their skin, their sex or their sexuality, but by the content of their character. I hope that day is almost here. (Marquis D. Walker)
THE GIFT OF LOVE
When I work directly with people with AIDS, I receive the Gift of Love, sometimes from the most unexpected places and people: Some years back I worked with a couple, both in the final stages of their lives. The one had been thrown out of the family home some years earlier when he told his parents that he was HIV-positive and there had been no contact for many years. In the final weeks leading up to his death, he asked me to inform his parents of his illness. Within six hours of my call to his parents, these two 80-something year old people arrived at the couple's home. Over the next weeks there were many tears of sadness as well as joy. Eventually their son died and instead of heading back to their home, these two people stayed with their son's partner, who for all intents and purposes was a total stranger, and nursed him into death over the next four months. They took care of him as if he were their own flesh and blood. He died in their arms, loved and respected for who he was and what he meant to their son.
I have also noticed that this Gift is lost when I forget the individuals behind the statistics, economics, and politics. I pray that I never forget that love can only be given and received by people, not from beliefs, knowledge, money or power. I pray that I remember each person, each smile, each tear.
Losing them is almost unbearable
Forgetting them will be impossible.
(Mom and Dad A.)
THE GIFT OF GRATITUDE
Few people receive the gifts of intimacy, surrender, community, service, wisdom, presence, meaning, and love, in such abundance as those who work with people with AIDS. Most live in numbness and quiet desperation. To care for the seriously ill and dying is to touch the face of God, and to stretch the limits of patience, compassion, and human potential. These are indeed difficult tasks, and the reward is equally large. I am grateful for these Gifts - for the opportunity to be alive, to feel, to be here, for the opportunity to be stretched to my limits, to reach out and truly touch and love another human being. I have learned so much from the dying. The dying have so much to teach the living, and the living are enriched in the process.
Life has touched me and I have touched life.
I have been blessed. (Anonymous)
THE GIFT OF GOD
When I first started working in HIV AIDS many years ago, I seriously doubted that any God of Love and Mercy could allow such suffering and human indignity. For years I was very angry at God for not intervening in some way, shape or form. I was angry that My God would let me love someone with all my heart only to take them from me and leave me to pick up the pieces of my life, not once, but twice. It was the death of my first partner that started me on the path to realising that God gives us choice, with no strings attached. I watched my lover die, and reaching out his arms to hold God's love. He was so brave. Touching the face of God made me see that there was nothing 'wrong' with AIDS, human sexuality and even death. It was not a judgment or punishment or retribution for being who we are.
Death is simply a part of the cycle of life. Once I had removed my judgments about it, I could accept that I had to 'let go and let God'. In this act - which was not simple by any stretch of the imagination - I found a friendship with God unlike any relationship I have ever had. It became very clear to me that I could ask my friend God for any kind of help, as long as I was willing to do my part. It was as if I had been told that if I wanted something, I had to pray for it and then hand it over to God to do something about. For me it became letting God work through me. It became a process of recognising God in everyone. Truly a case of the God in me recognising the God in you. Knowing - not just believing - that God loves me, has given me the strength and will to do God's work without questioning and constantly asking 'why'?
Have faith and trust God. He'll always bring you through. And when you walk through a storm, keep your head up high. I am.(Mike)