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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

Stigma

 

 

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Until we can define what we are dealing with when we talk of stigma and discrimination we may not be able to do anything very much. Below are some ideas put together as a result of the stigma discussion at the Jerusalem conference and other discussions about stigma we have If you have something to add that may help people in their creation of anti-stigma and anti-discrimination programs please call in to our email.

STEREOTYPING

  1. Grouping or categorizing persons under one heading and attributing characteristics to all the individuals under that heading
  2. Making generalizations about groups of people
  3. Making judgments based on how people look
  4. Being unable to see people as individuals with individual characteristics
  5. Using stereotypes on which to base film or TV suspense movie plots

REINFORCING THE STEREOTYPE

  1. Untreated people who are visible on our streets present an image that people respond to with fear and avoidance
  2. In some societies eccentricity is well accepted, in others people must conform for acceptance.

HISTORICAL ASSOCIATIONS

  1. The idea that psychiatric disorders have to do with the supernatural
  2. An almost innate feeling of fear among many members of society
  3. A fear of associating with anyone who has a mind disorder
  4. Society's recollection of the "madhouse" as demonstrated in films like "The Snake Pit" back in the 40s.
  5. A human being's distrust of the unpredictable

IGNORANCE

  1. The lack of knowledge and the public unawareness of how these disorders affect people
  2. Attributing logical and reasoned thought to the actions of people in psychosis
  3. A susceptibility to make fun of mental illness
  4. Government and societal discrimination against people with these disorders in matters of employment, travel (visas), etc..
  5. The mental health workforce is largely untrained and ignorant of current knowledge in the field

ABUSE

  1. Persons recovering from or unstable with illnesses of the mind are very vulnerable to unscrupulous individuals who would dupe or otherwise abuse them.
  2. Persons angered by the behaviour of people with illness may physically abuse them.
  3. Vulnerability to coercion by religious cults, drug users and dealers and others

LANGUAGE

  1. Using words that have unpleasant connotations
  2. Using words which are downright offensive e.g. schizo; psycho. (Extraordinarily enough a group of consumers have adopted for themselves the term "the crazies"
  3. Describing disorders using vivid adjectives e.g. "horrific; incurable"
  4. Finding suitable terms to describe experiences
  5. Using judgmental language
  6. The pejorative connotation of words that were originally ways to describe people's conditions e.g. mental illness
  7. Discounting anything someone with experience of schizophrenia says as delusional thinking or not to be considered.

THE BENEFITS OF LANGUAGE

  1. Finding more suitable expressions which put the hope back e.g. "treatable"
  2. Being able to ask those who have experience of mind disorders whether they can suggest better ways of using language
  3. Thinking before you speak. Putting yourself in the other persons position.
  4. Listening to and conversing with persons with experience of schizophrenia

VALUING PEOPLE WITH DISORDERS

  1. People should not be characterized by the disorders they suffer. There is more to a person than this.
  2. Searching out people's abilities is of more value than reinforcing notions about their disabilities

CHANGING THE EXPECTATIONS

  1. Better medications and better management indicate that today recovery is a very real hope.
  2. Better income provision for those with such disabilities may make them less vulnerable to discrimination.

ADDITIONAL ARTICLES:

Document Name & Link to Document

Description

File Size /pdf

Guidelines for National Human Immunodeficiency Virus Case Surveillance, Including Monitoring for Human Immunodeficiency Virus Infection and Acquired Immunodeficiency Syndrome

AIDS surveillance has been the cornerstone of national efforts to monitor the spread of HIV infection in the United States and to target HIV-prevention programs and health-care services. Although AIDS is the end-stage of the natural history of HIV infection, in the past, monitoring AIDS-defining conditions provided population-based data that reflected changes in the incidence of HIV infection. However, recent advances in HIV treatment have slowed the progression of HIV disease for infected persons on treatment and contributed to a decline in AIDS incidence. These advances in treatment have diminished the ability of AIDS surveillance data to represent trends in the incidence of HIV infection or the impact of the epidemic on the health-care system. As a consequence, the capacity of local, state, and federal public health agencies to monitor the HIV epidemic has been compromised

 

Hatred, Violence and AIDS-Related Stigma

Discrimination against people living with or otherwise affected by HIV/AIDS1 has been dubbed "the third epidemic" of HIV/AIDS, the first being the spread of the virus itself, followed by the clinical disease, acquired immune deficiency syndrome (AIDS). Every society in the world has provided evidence of HIV/AIDS-related discrimination and violence. As with most forms of discrimination, its manifestations range from the subtle to the fully institutionalized. Some countries have adopted legal protections for people living with HIV/AIDS; however, there is no evidence whether these measures have resulted in reductions in the incidence of HIV/AIDS-related discrimination or violence. In most countries, the law is silent about HIV/AIDS-related forms of discrimination and violence perpetrated by either public or private actors.

 

Hepatitis C (Hepatitis C Virus) Disclosure

The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one’s life. Common feelings that people experience when considering disclosing their Hepatitis C Virus

 

Hepatitis C-change: Executive summary

Hepatitis C related discrimination takes many forms and occurs in many areas of public life. It is apparent from the evidence that hepatitis C related discrimination in health care settings is widespread and discrimination in employment is also commonplace. The Enquiry has heard a wide range of examples of discrimination experienced by people with hepatitis C, such as people being rejected by family and friends, ostracized in workplaces and communities, denied life insurance, and terminated from employment.

 

HIV and AIDS-related stigmatization, discrimination and denial: forms, contexts and determinants-Research studies from Uganda and India

From the moment scientists identified HIV/AIDS, social responses of fear, denial, stigma and discrimination have accompanied the epidemic. Discrimination has spread rapidly, fueling anxiety and prejudice against groups most affected as well as those living with HIV/AIDS.

198 kb pdf

HIV & Civil Rights from the ACLU Discrimination adds to the daily struggles faced by the growing number of people living with HIV/AIDS in the United States—people who are predominantly poor and disproportionately African American or Latino/a.  Almost every agency told us that the biggest problems facing their clients involve meeting basic needs—coping with poverty, hunger, illiteracy, inadequate medical care, lack of transportation, and homelessness. 271 kb pdf
HIV/AIDS and Human Rights
Discrimination adds to the daily struggles faced by the growing number
 of people living with HIV/AIDS in the United States—people who are 
predominantly poor and disproportionately African American or Latino/a.  
Almost every agency told us that the biggest problems facing their clients 
involve meeting basic needs—coping with poverty, hunger, illiteracy, 
inadequate medical care, lack of transportation, and homelessness…
Individuals living with HIV/AIDS need to know their rights and need to  
resources to advocate for themselves when their rights are threatened
1153 kb pdf
HIV/AIDS AND THE LAW There are many untrue stories about AIDS. People who are living with HIV or AIDS are discriminated against in all kinds of ways in our society. For example, some people are refused employment or proper health care. This is mostly because very few people understand what HIV and AIDS mean. It is important that people understand what HIV and AIDS are, what causes the illness and what the law says about peoples rights  
HIV/AIDS: Discrimination, Stigma and Shame
We have a lot of strength. It is what has helped us withstand the 
difficulties of an alienating, often hostile environment. We can build 
on those strengths. For example, one of the most positive developments 
in our work in HIV prevention has been developing capacity of community-
based organizations to work within their own communities. This is 
helping to empower communities, building important links and greater 
trust with dominant society structures and builds on relationships of trust 
already in the communities. More still needs to be done. However, only 
by setting the goal of addressing past wounds and moving on will this
 be accomplished. The past is real, but the future can better.
 
HIV/AIDS EMPLOYMENT POLICY AND PROCEDURE The NHS in Wales recognises that as an employer and a public health body it has a duty to counter discrimination and stigma against people who are or may become HIV positive or who have AIDS. This duty includes employees of Local Health Boards. It recognises the need to protect patients, to retain public confidence, and to provide safeguards for the confidentiality and employment rights of HIV infected health care workers. Pdf 23 kb
HIV/AIDS, EQUITY AND HEALTH SECTOR PERSONNEL IN SOUTHERN AFRICA HIV/AIDS impacts on all organisations by increasing absenteeism and attrition. Worker losses and replacement needs add to direct and indirect organisational costs. HIV impedes the efforts of educational systems to produce different cadres. In the health sector, HIV/AIDS has additional impacts. It increases the demand for care, the level and complexity of work and the risk of infection, whilst also placing a strain on resources. These burdens exacerbate problems of sickness, absenteeism and workload, increasing losses of health workers. Health workers lose status in their patients’ eyes by their inability to treat the disease. The consequent stress and fear lowers health worker morale and adds to factors pushing them out of low income countries and into the international labour market. Pdf 305 kb

HIV Infection and AIDS in the Public Health and Health Care Systems - The Role of Law and Litigation

The AIDS Litigation Project has reviewed nearly 600 reported cases involving individuals with human immunodeficiency virus (HIV) infection and acquired immunodeficiency syndrome (AIDS) in the federal and state courts in the United States between 1991 and 1997. Cases were identified through a federal and 50-state computer and library search. An important subset of litigation relates to HIV/AIDS in the public health and health care systems, since the law affects health care institutions and professionals, patients, and public health policy in America.

 

HIV PARTNER NOTIFICATION: Why Coercion Won't Work
The term "partner notification" refers to activities aimed at identifying 
sex and/or needlesharing partners of someone with a disease 
communicable through sex or shared needles and informing them that 
they have been exposed to the disease.1 Little empirical work exists that
 effectively evaluates the costs and benefits of partner notification. Voluntary
 partner notification plans, which encourage an infected individual to notify
 his or her partners and provide training and support, are one component of 
effective HIV prevention and treatment. However, the available evidence 
does not justify coercive partner notification. Instead, the scientific 
research shows that partner notification that is not voluntary or that 
is linked to HIV surveillance through name reporting will not work.
 

HIV Stigma Scale

Form to test stigma

105 kb pdf

HIV Testing and Confidentiality: Final Report

HIV was subsequently made notifiable or reportable by legislative amendment in all provinces and territories. Some provinces and territories require nominal reporting of AIDS and sometimes even HIV, while in the others reporting is non-nominal. Recently, some provinces have revised their HIV reporting requirements or, like Québec, are in the process of doing so. In the United States, debate about HIV reporting has been raging for the last twelve months. While there is consensus that there is a need for accurate monitoring of HIV infection and that AIDS surveillance "can no longer provide as timely, complete, representative, and accurate a reflection of the epidemic as we need,"

 

HIV/AIDS Stigma: An Impediment to Public Health

Stigma is not new to public health, nor is it unique to HIV/AIDS. History provides an unfortunate abundance of examples of ‘prejudice, discounting, discrediting, and discrimination.’

60 kb pdf

HIV/AIDS-related Stigma and Discrimination: A conceptual Framework and an Agenda for Action

In 1987, then director of the WHO Global Programme on AIDS, identified three phases of the HIV/AIDS epidemic: the epidemic of HIV, the epidemic of AIDS, and the epidemic of stigma, discrimination, and denial.—he noted that the third phase is ‘as central to the global AIDS challenge as the disease itself."

511 kb pdf

HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991-1999

People with AIDS and the social groups to which they belong have been stigmatized worldwide since the epidemic began. Stigma has interfered with effective societal response to AIDS and has imposed hardships on people living with HIV as well as their loved ones, caregivers, and communities

1,414 kb pdf

HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991–1999

Although support for extremely punitive policies toward PWAs has declined, AIDS remains a stigmatized condition in the United States. The persistence of discomfort with PWAs, blame directed at PWAs for their condition, and misapprehensions about casual social contact are cause for continuing concern and should be addressed in HIV prevention and education programs.

 

Hospital Recalls Research Body Parts - Items May Have Infectious Diseases

A Texas medical center has announced a recall of body parts that were shipped to research facilities across the nation.

 

I live in the hope of a world that will be, if not free of disease, free of fear and discrimination

Four petitioners directly affected by the HIV/AIDS, epidemic from the city of Mumbai, two of whom are HIV positive, have filed a petition in the Bombay High Court seeking declarations from the court on the issues of the right to marry of PWAs and confidentiality in the medical setting.

 

Interventions to Reduce HIV/AIDS Stigma: What have we learned?

Stigma is a common human reaction to disease. Throughout history many diseases have carried considerable stigma, including leprosy, tuberculosis, cancer, mental illness, and many STDs. HIV/AIDS is only the latest disease to be stigmatized

609 kb pdf

Job interview questions-can and cannot ask Job Interview Questions That You Can and Can't Ask Under the ADA   The U.S. Equal Employment Opportunity Commission (EEOC) is the federal agency that enforces the ADA.  

Kerala India

Kerala is considered one of the most successful cases in poverty reduction in the country. The success primarily owes to public action in carrying out effective land reforms and providing all-round social infrastructure, particularly education and health.

777 kb pdf

Lack of Awareness of Hepatitis C Risk Among Persons Who Received Blood Transfusions Before 1990

Hepatitis C virus (Hepatitis C Virus) is the most common chronic bloodborne virus infection in the United States, with an estimated 2.7 million persons chronically infected.' The Centers for Disease Control and Prevention (CDC) recommends that persons with known risk factors for Hepatitis C Virus infection be identified and offered counseling and testing!

 

MANDATORY PRE-MARITAL TESTING 

Rather than requiring that people seeking marriage licenses be tested for HIV, states should focus on education, e.g., providing marriage applicants with AIDS education materials. Education should emphasise the importance of prevention and voluntary testing

 

On Stigma and its Public Health Implications

Amidst this profusion of research we return to the stigma concept to reconsider the conceptualization of stigma, to explore how and why it has pervasive and persistent effects on people’s lives, how and why it is connected to the health of the public. After considering these issues we turn to ideas about what we need to know and what we need to do to address stigma and its consequences.

 

Paradoxically enough, the only way in which we will deal effectively with the problem of the rapid spread of this epidemic is by respecting and protecting the human rights of those already exposed to the virus and those most at risk

The paradox of HIV is that it is the rights of affected populations and those most at risk that must be protected in order to prevent the spread of the epidemic. In the HIV/AIDS pandemic, it is widely misunderstood that the rights of the society or community at large can best be safeguarded by resorting to the systems of mandatory testing, breach of confidentiality and discrimination against people living with HIV/AIDS

 

Phenomenology

Phenomenology is a movement in philosophy that has been adapted by certain sociologists to promote an understanding of the relationship between states of individual consciousness and social life. As an approach within sociology, phenomenology seeks to reveal how human awareness is implicated in the production of social action, social situations and social worlds

 

PIERCING THE VEIL OF SECRECY IN HIV/AIDS AND OTHER SEXUALLY TRANSMITTED DISEASES: THEORIES OF PRIVACY AND DISCLOSURE IN PARTNER NOTIFICATION At least since their appearance in Western Europe in the late fifteenth century, sexually-transmitted diseases (STDs), or "venereal diseases" as they were once called, have been characterized by a remarkable paradox. Despite their endemic nature in Europe and North America, STDs were, and still are, a "secret malady." Persons have endeavored to keep their sexually-transmitted infections hidden from the social world -- from their sexual partners, families, and communities. At the same time, prevailing social mores have kept STDs from the public consciousness and consequently have prevented STDs from receiving public action and effective intervention.  

REFRAMING WOMEN'S RISK: Social Inequalities and HIV Infection

Social inequalities lie at the heart of risk of HIV infection among women in the United States. As of December, 1995, 71,818 US women had developed AIDS-defining diagnoses. These women have been disproportionately poor, African-American, and Latina.

 

Sex and youth contextual factors affecting risk of HIV/AIDS

The issues that surround youth and AIDS

314 kb pdf

Sexual Prejudice: Motivations

A variety of motivations underlie sexual prejudice. One way to understand those motives is to ask how a particular heterosexual's antigay attitudes benefit her or him psychologically.

 

Stigma and AIDS: Three Layers of Damage

Stigma associated with HIV/AIDS can be organized into three layers.

 

Stigma and Global Health: Developing a Research Agenda

Typically, miners who are believed to be infected are shunned. They sit alone in buses that carry workers to the pit. They eat alone in the company kitchens because their colleagues are afraid to share utensils or crockery with them."

 

Stigma without Impairment: Broadening the Scope of Disability Discrimination Law It may, however, be more difficult in the case of disability than race to decide what classes of individuals face evils comparable to those addressed by the statute’s “core prohibitions.” Construing the 1964 Civil Rights Act to include Hispanic-Americans, Asian-Americans, or Caucasians appears (at least in retrospect) straightforward, because it is clear that people of any racial, ethnic, or national-origin group can be treated as moral inferiors by virtue of their membership in that group. In contrast, the justices in Sutton disagreed about whether discrimination against individuals with minor and correctable impairments was an evil comparable to discrimination against individuals with more severe, less tractable impairments. For the majority it was not, because the former, unlike the latter, are not a discrete and insular minority, left poor and powerless by a long history of exclusion and neglect. Because of this difference, the majority held an employer was “free to decide that physical characteristics or medical conditions that do not rise to the level of an impairment—such as one’s height, build, or singing voice—are preferable to others, just as it is free to decide that some limiting, but not substantially limiting impairments make individuals less than ideally suited for a job.”  

Strategies for working on the theme "stigma"

Currently, there is no one definitive framework for understanding stigma. Clearly stigma occurs at a number of levels: social, institutional, political and psychological. It also has a number of different manifestations within each level. And at each level, stigma can be overt or covert, direct or indirect.

 

Surveillance, Social Risk, and Symbolism: Framing the Analysis for Research and Policy

Name-based surveillance for HIV, considered alone, is a useful public health measure; its benefits outweigh its direct costs. There is little evidence that name-based surveillance directly deters individuals at risk of HIV from being tested, or exposes them to significant social risks. Yet such surveillance is chronically controversial. Understood in a broader context of the social risks and symbolic politics of HIV, as subjectively experienced by people at risk, this opposition is both rational and instructive. Although often discussed, the social risks of HIV infection are poorly understood. To the extent these risks have been addressed by privacy and antidiscrimination laws, the solution has been less complete than many public health professionals appear to believe: developments in law and policy, including the increasing prevalence of criminal HIV transmission laws and proposed changes in HIV testing and counseling standards, are contextual factors that help explain the opposition to name-based surveillance.

 

The most significant obstacle to progress against the AIDS epidemic is the threat of discrimination.

The significance of HIV/AIDS in the context of employment may be understood from two perspectives. The first, a rights perspective, focuses on the fact that people living with HIV/AIDS face discrimination in most spheres of their lives, including the workplace.

 

THE NATIONAL AIDS PREVENTION AND CONTROL POLICY - A COMMENT

"[I]t has been recognised that when human rights are protected, fewer people become infected and those living with HIV/AIDS and their families can better cope with HIV/AIDS."

 

The strategies of acceptance, prevention and treatment can be combined imaginatively to tackle HIV wherever it threatens people in the world. All three elements in the strategy are indispensable, and each of the three supports the other

The main purpose of interactions with the judiciary and policymakers is to sensitise them on the need for human rights based approaches while dealing with HIV/AIDS. This includes raising critical legal issues of consent, confidentiality, discrimination and criminalisation of vulnerable populations.

 

To me this seems a shocking and monstrous inequity of very considerable proportions that, simply because of relative affluence, I should be living when others have died, that I should remain healthy when illness and death beset millions of others.

When Justice Cameron spoke as quoted he echoed the HIV/AIDS reality that exists in much of the third world, including India. This reality is one in which most persons affected have little or no access to efficacious treatments for their condition.

 

VACCINE RESEARCH & ETHICAL CONCERNS

"Rather than seeing human rights and ethics as conflicting domains, it seems more appropriate to consider a continuum, in which human rights is a language most useful for guiding societal level analysis and work, while ethics is a language most useful for guiding individual behaviour."

 

Welfare Fraud and Welfare Stigma The paper argues that welfare fraud and welfare stigma, apparently two phenomena of opposite nature, may be modeled with the aid of a single apparatus, thus allowing a comparative investigation of participants’ take-up of welfare benefits. 71 kb pdf

Who Cares for Family & Friends-Providing care at Home

"Care in the community is good and care at home is even better". While this may be true for patients, it is not necessarily true for the families and friends who provide most of the care when death is imminent. Recently, the carers' perspective has tended to be overlooked and they have often been referred to as the "hidden patients". This project sought to reinstate carers as clients of palliative care.

 

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