HIV/AIDS AND STIGMA B.J. Caldwell, HIV/STI Prevention and Outreach Educator AIDS Committee of Guelph firstname.lastname@example.org www.aidsguelph.org / www.qlinks.ca HIV/AIDS CRISIS IN CANADA AGENDA Introduction 25+ Years Later…a look at PHAs in Canada Vulnerability and Stigma Overview of Current Issues for People with HIV/AIDS SURVEY DEMOGRAPHICS SURVEY HOUSEHOLD INCOME The vast majority of PHAs in Canada live in poverty – or are dragged their eventually by their disease and our backwards social assistance policies that don’t meet the needs of PHAs SURVEY – SOCIOECONOMIC PROFILE SURVEY - LIVING WITH HIV SURVEY - LIVING WITH HIV SURVEY - IMPACT OF STIGMA STIGMA PSA HIV/AIDS STIGMA HIV/AIDS is not alone among illnesses in being marked by stigma Epilepsy, mental illness, cancer, TB, and syphilis have been stigmatized in both past and present What makes HIV dif ferent? The multiple dimensions of HIV stigma HIV/AIDS STIGMA Research into HIV/AIDS stigma has found that people living with HIV/AIDS (PHAs) are stigmatized because: It is associated with behaviours that are already stigmatized or considered deviant (particularly IDU and homosexuality; PHAs are thought to be responsible for their infection HIV/AIDS is a life-threatening disease People are afraid of contracting HIV; and The religious or moral beliefs of others lead them to conclude that having HIV/AIDS is the result of moral fault, such as the promiscuous or deviant sex, that deserves punishment HIV/AIDS STIGMA It is the combination of these stigmas, together with their strength, that makes it so dif ficult to overcome HIV/AIDS - related stigma. Felt vs. Enacted Stigma: Felt Stigma: shame associated with the illness and the fear of being discriminated against on account of the illness Enacted Stigma: the actual experience of discrimination HIV/AIDS STIGMA Felt stigma often precedes enacted stigma One effect of felt stigma is to reduce the possibility of enacted stigma (discrimination) since people who feel stigmatized tend to conceal their illness in order to protect themselves.2 Upon being given an HIV+ diagnoses, a multitude of anxieties and concerns arise that result from the fear and uncertainty of how people will react These fears prevent people from disclosing to family/friends and benefiting from their support, from seeking employment, accessing healthcare benefits and services, or other services HIV/AIDS STIGMA It is clear from the stories told by PHAs from around the country (and the world) that PHAs do in fact experience both felt and enacted stigma and discrimination. VULNERABILIT Y Whether people resist the discriminatory attitudes and actions of others, or whether they accept them, those attitudes and actions af fect the way people see: Themselves Their social networks Their opportunities, and Their rights or entitlements It is also important to remember that early life experiences (with other forms of internalized oppression, poverty, and the other social determinants of health) can have a large impact on vulnerability in adulthood. Cumulative Effect VULNERABILIT Y How does discrimination make people more vulnerable to HIV infection? How does discrimination make PHAs more vulnerable to sickness and death? VULNERABILIT Y– SOCIETAL LEVEL Economic Political Disadvantages Disadvantages Stigma/Discrim. (Race, Gender, Sexual Orientation, Drug use, Criminal Social status, or Disadvantages Imprisonment) Legal Disadvantages VULNERABILIT Y – SOCIETAL LEVEL All of which increase a person’s vulnerability to HIV --- The Social Determinants of Health. VULNERABILIT Y Programmatic Level: S/D can lead to programs not being available or being offered in ways that do not empower, respect the dignity of, or meet the needs of PHAs or people vulnerable to HIV infection Personal Level: S/D are experienced directly in day -to-day occurrences with family, friends, service providers, and the public, as well as indirectly in the conditions created by discrimination at the societal level and the limitations imposed by discrimination at the programmatic level ALL THREE MUST BE ADDRESSED TOGETHER. VULNERABILIT Y The history of HIV/AIDS has shown that HIV can enter a community or country in many different ways In each country, where and among whom HIV enters obviously defines the early history of the epidemic With time, however, it evolves and moves along a clear pathway (although different in detail in each country) that has one vital, common feature: VULNERABILIT Y “ In each society, those people who were marginalized, stigmatized and discriminated against – before HIV/AIDS arrived – have become over time those at highest risk of infection.” Mann & Tarantola, 1996 VULNERABILIT Y This underscores the importance of recognizing how discrimination at the societal and programmatic levels have a profound impact on how a given individual can protect his/herself from HIV infection or maintain his/her health, welfare, and safety while living with HIV/AIDS. VULNERABILIT Y – INJECTION DRUG / DRUG USERS The risk of infection among IDUs who inhabit impoverished urban centres with a high density of drug users is in part (and, arguably, a large part) an ef fect of the criminal status of drug use in Cdn law – a legislated form of discrimination against IDUs VULNERABILIT Y – ABORIGINAL/FIRST NATIONS The risk of infection experienced by Aboriginal peoples as a result of their overrepresentation among drug users and in prison populations cannot be understood or addressed without recognizing the events and structures (past and present) that have contributed to substance use, forced migration, unemployment, cultural displacement and despair among the Aboriginal people of Canada VULNERABILIT Y – QUEER YOUTH And an environment that does not acknowledge, and respect the sexual and gender identities of gay/bi/trans youth, that does not provide support at home or in school for the coming out process,provide role models and a sense of history and that tolerates high levels of violence and abuse against gay/bi/trans people contributes to the many risks to the health of gay/bi/trans youth – including the risk of HIV infection VULNERABILIT Y - POVERT Y Lastly, we cannot forget to examine the role of poverty (independent of any other risk factors) in leading to HIV infection and to sickness and death, and how the structures of our economy and our society benefit (discriminate in favour of) people with higher incomes or more wealth. 3 CURRENT PROBLEMS FOR PHAS Family and Community Stigma, Stress, Secrecy, and Isolation PHAs must be careful who they tell “ I feel it’s stressful cause I have to be careful not to tell the family members who can’t be told. They will shun us for sure. They are very paranoid about this disease. Nothing you tell them will make any difference” “Most of my stress is about disclosure and discrimination regarding HIV” Anticipating such reactions or having experienced them can lead to isolation and the toll of keeping secrets can weigh heavily on a person As a result, PHAs can be fearful of reaching out for support from family, friends and service providers which can affect disease progression CURRENT PROBLEMS FOR PHAS Family and Community Living in Smaller/Rural Communities The need for confidentiality in rural areas can be greater and rural PHAs must go to great lengths to protect their confidentiality Fear of cashing a cheque from an AIDS organization Drive hours to other communities for medical care Fewer opportunities for services and a larger reliance on available services CURRENT PROBLEMS FOR PHAS Cultural Communities PHAs who identify with a specific ethnic or cultural community experience S/D from others within their community Gay/Bi Men Aboriginal people Ethnocultural Communities Deaf community S/D is compounded by the fact that these communities are already minorities and often marginalized For the PHA there may be no where else to go once they have been isolated by their community AND For the community it can be hard to address issues associated with vulnerability to HIV infection (sex, homosexuality, relations between men and women) without fear of reprisal from society at large. HIV STIGMA AND HIV- GAY MEN From the website: HIVstigma.com (Gay Men’s Sexual Health Alliance) CURRENT PROBLEMS FOR PHAS Employment and Workplace Can be a potentially unsafe environment whether they are currently at work, returning to work, or looking for work for the first time Employers may: Breach confidentiality of HIV status Fail to accommodate the needs of PHAs (duties, schedule, medication side effects, medical appts, or temporary leave Employees may fear to claim medical benefits for fear of disclosing their status to employers and may have to quit work to be covered under disability insurance to afford the cost of medicine CURRENT PROBLEMS FOR PHAS Housing Particularly in the private rental market Discrimination is rampant as a result of ignorance and stigma If a PHA is on disability (they usually are required to disclose their source of income on forms) it may be used against them. CURRENT PROBLEMS FOR PHAS Healthcare Early on in the epidemic, there were flagrant examples of healthcare setting discrimination (refusing to provide care, avoiding/neglecting patients, making prejudicial remarks) These have decreased in number but they are still present (although illegal) and are usually not addressed because the PHA would have to disclose their status publicly to redress the situation (they are highly vulnerable) Confidentiality is another issue – healthcare workers are required to maintain confidentiality (on a need to know basis) but do not always do so CURRENT PROBLEMS FOR PHAS Travel Until late 2009, PHAs were not allowed to enter the U.S. for any reason unless given a special permit for certain government approved events/reasons. There are many other countries that discriminate against PHAs at various levels Medications GAY/BISEXUAL MEN Prejudice against homosexuality has resulted in predominantly negative legal, social, and cultural environment for gay men, lesbians, and bisexuals: Queer youth have little support within their families, among their peers, at school in recognizing and af firming their sexual orientation and in developing relationships with other queer youth GAY/BISEXUAL/QUEER/TRANS MEN An overwhelming majority of queers have been verbally abused, and many have been threatened, chased or followed, assaulted, or otherwise abused Same-sex sexual activity until only relatively recently was illegal and the Criminal Code still includes provisions that discriminate on the basis of sexual orientation Recent changes to Age of Consent Legislation Literature and information about same-sex relationships have been censored by schools/libraries and Canada Customs still seize material unfairly at the border. GAY/BISEXUAL/QUEER/TRANS MEN The early prevalence of HIV among gay/bi men has resulted in an enduring association between HIV/AIDS and homosexuality The predominantly negative attitudes towards homosexuality have influenced peoples attitudes and behaviour towards HIV/AIDS in general and gay and bisexual men in particular. INJECTION DRUG USERS Drug use is a powerful source of stigma and people who acquire HIV through drug use (like those who acquire it via same-sex activity) live with a double stigma. Studies done around the world have shown that people are more likely to have sympathy and compassion for people who acquire HIV “ through no fault of their own” --- the so called innocent victims INJECTION DRUG USERS The stigma of drug use is reinforced by the illicit status of drug use in law and by the application of coercive measures, including police surveillance, criminal prosecution, and criminal penalties against illicit drug users Legislation is arguably itself discriminatory and it definitely is discriminatory in its effects: The prohibition of drugs and the application of criminal sanctions, compounded by existing patterns of discrimination based on race and income has a disproportionate effect on impoverished and minority populations --- look at the demographics of our prisons and the reason for incarceration INJECTION DRUG USERS The marginalized status of drug users profoundly af fects the way they are treated by others (family, friends, healthcare workers, police, landlords) Drug users find that they are denied the legal protections, health services, and social supports that others enjoy NFL BREAST CANCER AWARENESS For Breast Cancer Awareness Month some NFL players wore pink gloves, armbands, even shoes to promote efforts to fight the disease. Players brought their mothers, grandmothers, and other women who had survived breast cancer wearing pink jerseys and announcers shared stories of survival from their own families. CAN YOU IMAGINE? The NFL --- or any sports league – launching a similar campaign to address HIV and AIDS? Which player would trot out a brother, sister, father who’s HIV+? Which TV announcer would proudly point to those living with HIV and speak of their “inspirational” battle with HIV?
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