Читать книгу Finding Hope, Spirituality and Faith - TJ Wicker - Страница 4

A diagnosis of HIV infection carries both physical and social ramifications. Physically, testing HIV-positive means that one has contracted a life-threatening disease. PLWH typically suffer detriments to their immune systems which increase their vulnerability to opportunistic diseases (e.g., bacterial and viral infections, neurological diseases, and cancers) that may ultimately result in death. Socially, HIV infection also means that one has gained a mark of stigma, that can lead to devaluation in a variety of contents. Stigmatization is a major issue that societies and support organizations have to contend with in dealing with the problems of HIV/AIDS. Therefore, HIV infection not only means that one has to living with and managing a chronic health condition; it also means that one will most likely face social stigma that may fundamentally change the way one perceives oneself and interacts with others.

Stigma can affect the care and acceptance of people who are HIV positive in their society. After a person has tested positive with HIV, they face the decisions that include how to enter and adhere to care, and whether to disclose their HIV seropositivity to their partners, friends, family, loved ones, colleagues, employers and even health care providers, as well as on the self-worth, sense of belonging (e.g., in community or faith based settings) and overall general quality of life.

Conversely, stigma can also trigger positive forces for change and networks of solidarity that rise to challenge the social norms and practices that marginalize, stigmatize and discriminate. Stigma is a powerful and discrediting social label that radically and negatively affects the ways individuals view themselves and the ways others view the individual as a person. HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS.

Stigma can also have a persuasive presence in the everyday lives of many people living with HIV, as well as many people who care for, are married to or are friends with PLWH. Stigma can also affect people linked with HIV in other ways through their sexual practices, such as) same-sex attraction), or professions, such as (sex work), or behaviors, such as (injection drug users) that are associated with HIV transmission.

In 35% of countries with available data, over 50% of people report having discriminatory attitudes towards people living with HIV. Stigma and discrimination also make people vulnerable to HIV. Those most at risk to HIV (key affected populations) continue to face stigma and discrimination based on their actual or perceived health status, race, socioeconomic status, age, sex, sexual orientation or gender identity or other grounds. Stigma and discrimination manifests itself in many ways. Discrimination and other human rights violations may occur in healthcare settings, barring people from accessing health services or enjoying quality health care. Some people living with HIV and other key affected populations are shunned by family, peers and the wider community, while others face poor treatment in educational and work settings, erosion of their rights, and psychological damage. These all limit access to HIV testing, treatment and other HIV services.

Stigmatization is a dynamic social process that arises from the perception that an individual has undesirable attributes, thus, reducing him in the eye of the society. Stigmatization sets an individual or group apart from the majority of the population with the result that the individual or group is treated with suspicion or hostility and that others regard them as tainted and discounted. People with discreditable attributes may seek to hide their attributes and avoid stigma or undertake information management by controlling what they tell others.

Self-stigma and fear of a negative community reaction hinders efforts to address the HIV epidemic by continuing this great wall of silence and shame surrounding the virus. Negative self-judgement resulting in shame, worthlessness, hopelessness and blame represent an important but neglected aspect of living with HIV. HIV stigma is unnecessary judgment and discrimination placed on those who want nothing more than a life without the virus.

Self-stigma affects a person’s ability to live positively and limits meaningful self-agency, quality of life, adherence to treatment and access to health services. HIV stigma first originated from a fear of death. It was part of the anxiety of an illness that had such a devastating impact during the early years of the epidemic. Social stigma today toward those of us living with HIV is actually much greater than it was when I was diagnosed in 1986. Back then, we were so traumatized by learning about our diagnosis, mostly because we were afraid of dying. Presumably so, it was a death sentence at the time. There were some people that even kicked out their positive roommates or disowned their family members, not because of stigma, per se, but because they were deathly afraid of HIV and of contagion.

Now in present day 2019, and with the tremendous advances in technology, we now know that HIV can be a manageable condition, although the social stigma is still present, even though science has made HIV controllable, the cloud of stigma is still prevalent. It’s like a huge scar across the entire society, always reminding us of the looming shadow of AIDS and the shame of those who are infected.

Stigma is mostly expressed in language. Since the onset of this pandemic, the powerful metaphors associating HIV, are with death, guilt, punishment, crime, horror and ‘otherness’ and have compounded and legitimated stigmatization. This kind of language derives from, and contributes to, another aspect underpinning blame and distancing; people’s fear of a life-threatening illness. Some fear-based stigma is attributable to people’s fear of the outcomes of HIV infection. In particular, the high fatality rates (especially in areas where treatment is not widely accessible), fear related to transmission, or fear stemming from witnessing the visible debilitation of advanced AIDS. Stigma is so very deeply rooted, operating within the values of everyday life.

Although images associated with AIDS may vary, sadly, they are all patterned so as to ensure that AIDS-related stigma plays into, and reinforces, social inequalities. While the quality of life has improved enormously for people with HIV in the past 39 years, many of the same social and psychological barriers remain.

HIV is unlike any other disease, at least not in the way that the public perceives it. What separates it and makes it different from other illnesses, like cancer or heart disease, is that like a communicable disease, those infected are often seen as vectors for transmission. Blame is frequently assigned, and not just to the infected individual but to an entire population, whether they be injecting drug users, gay men, or people of color.

People with HIV faced stigma on a number of fronts because HIV touches on so many social taboos including sexuality, death, sexual practices (e.g. practicing anal sex), gender roles, morality (e.g. whether or not they were a 'good' or 'bad' person), race and mental health. Many thoughts that HIV is especially stigmatised because it is mainly caught through sex and often thought to affect 'promiscuous' people. Some people remarked that the only way to overcome prejudice and stigma was to be more open about the disease and try to listen to people who have HIV.

Even before the AIDS epidemic began in the early 80s, many of these groups had already been stigmatized, labeled by many, as being either promiscuous or irresponsible. By the time the first wave of infections hit, the rapid spread of the disease through these communities only perpetuated negative stereotypes. As a result of these stereotypes, the people most at risk of HIV were often sent into hiding, either for fear of discrimination, abandonment, or abuse.

Discomfort with one’s sexuality also plays a major role in the stigmatization of HIV. Even in otherwise known progressive cultures, sexuality can often incite intense feelings of embarrassment or shame, particularly when related to homosexuality, sexually active women, or sex among youth. At the same time, so-called "secondary disclosures" (the "How did you get it?") further prevent many from stepping forward when faced with such fears as having to admit an affair, reveal a drug problem, or come out about one's sexuality. As sad as it sounds, some HIV criminal laws in several states only serve to reinforce these fears, casting persons with HIV as "blameworthy" while suggesting that those without are "victims." All of these issues only contribute to feelings of stigmatization, both real and perceived, and may explain why 20% of the 1.2 million Americans living with HIV remain wholly untested. These inequalities particularly include those linked to gender, race and ethnicity, and sexuality.

Men and women often do not deal with this in the same way when infected or believed to be infected by HIV. Adapting and coping, can be extremely difficult for persons in already stigmatized communities to identify as HIV-positive, many PLWH do accept their HIV status and successfully form an identity of being proactive and choosing to live. Adequate treatment for depression and anxiety, along with acceptance of one’s diagnosis, provide a protective buffer against stigma and promote acceptance of lifelong HIV treatment.

The big question remains, while HIV still exists, will we ever be able to completely end the stigma that surrounds it? There’s no easy answer, but I believe the new U equals U movement is one source of great hope. U equals U, or U=U, stands for “undetectable equals un-transmittable”. It represents the major consensus of the medical community, that when HIV is undetectable in the body, it cannot be transmitted. That means a person living with HIV who has an undetectable viral load cannot transmit the virus to anyone else.

Today, the U=U consensus statement has been signed by 766 organizations in 95 different countries. And for World AIDS Day this year, Canada became the first country to sign on to the statement. It is my sincere hope that more countries will soon follow. The HIV stigma still exists today in every corner of the world, but there is hope. There is hope in all the work that has been done to raise awareness and breakdown this stigma. There is hope in the U=U movement and there is hope in all of the people who continue to live their lives with HIV because we won’t let the virus, or the stigma that surrounds it, hold us back. I am a firm in the belief that finding one’s spirituality and the meaning of our life dramatically benefits those afflicted with the virus, in addition to those who are in-directly, or directly in contact with someone that is positive.

Learning how to overcome HIV stigma is not never an easy thing. It requires a great degree of self-reflection, as well as an honest assessment of your own personal biases and beliefs. One of the aims is to understand which of our fears are perceived (based on attitude or perception) and which are enacted (based on actual experience). By separating these two, you'll be better equipped to lay out a strategy to not only overcome your fears but to better protect yourself against real acts of discrimination and abuse.

Overcoming stigma is not so much a decision as a process, one that takes time and patience. Most importantly, it's about not being alone. Sharing your fears with others can often put things into a much better perspective, providing you a sounding board, rather than isolating yourself with your deepest, darkest looming thoughts. While many people with HIV are now enjoying strong, healthy, full lives; urgency and collaboration are needed to ensure dignity, decency, and survival for the many more people living with HIV and key populations still struggling.

A fairly new organization that has been helping PLWH, families and friends since 2008, is the Stigma Index. It is a rights-based organization, that focuses on emancipation and self-determination. Over the past 12 years they have spoken with, interviewed and surveyed tens of thousands living with HIV, getting to know, again and again, the issues of crucial importance to the lives of people living with HIV: their involvement, rights and treatment.

In addition, in 1983, at a health conference in Denver Colorado, a group of HIV and AIDS activists publicly articulated for the first time, the needs and values of people living with HIV. The Denver Principles called for an end to discrimination against people living with HIV, for respect of our rights, and for people living with HIV to be involved in all levels of decision-making.

What was written in Denver laid the foundations of the GIPA principle, the (Greater Involvement of People living with HIV). It was formalized eleven years later at the 1994 Paris AIDS Summit when 42 countries agreed to “support a greater involvement of people living with HIV/AIDS at all levels and to stimulate the creation of supportive political, legal and social environments”.

The HIV response has evolved with the HIV epidemic. Similarly, the work of the Global Network of People living with HIV has greatly evolved over the 30-odd years of its existence. They work with communities of people living with HIV, regardless of whether they are geographically, or identity based, to challenge governments and global leaders to improve access and quality of essential HIV prevention, treatment, care and support services. They have created different evidence gathering tools to support networks of people living with HIV and HIV community activists in their advocacy. The tools use the methodology of learning-by-doing, empowering people living with HIV with knowledge and skills and building the capacity of our partners.

Using the power of evidence-based advocacy, they improve the HIV response and the lives of people living with HIV. In different countries the tools have been instrumental to policy change.

GNP+ is based on the GIPA principle. All research and advocacy are designed and implemented by people living with HIV. GNP+ collects the voices of people living with HIV in all their diversity and they make sure that our needs, hopes and challenges are heard at every possible junction where, together we can influence the HIV response. The GNP+ is the global network for and by people living with HIV. They work to improve the quality of life of all people living with HIV. This means they advocate for, and support fair and equal access to treatment, care and support services for people living with HIV around the world.

It is their vision that people living with HIV will only enjoy a better quality of life if we keep demanding it. They support and nurture a powerful and united worldwide social movement of people living with HIV. As a direct result of working as part of a the (team) implementing the Stigma Index, many lives have been touched and friendships formed that will (and already do) extend beyond the period of data collection and scope of the project. The results from the Stigma Index in many countries indicate that stigma is not impacting the quality of health services available to PLWH, but also that it is impacting someone’s quality of life and sense of self, within a dynamic and changing social context.

Another pertinent topic is to learn to understand your rights under the law. There are several community-based organizations that can assist you and even put you in touch with some legal services, if you are faced with any type of discrimination in the workplace, home or even healthcare providers. This can be quite a discerning subject. Disclosing a disability is a very personal decision, and for people living with PLWH, it can be extremely difficult considering the stigma that still exists today.

Since HIV is not spread through ordinary workplace activities, there is no reason why you must disclose your HIV status at work. This is also the law. You may claim you have a disability and need a workplace accommodation, but by no means are you required to disclose the details of your disability.

If you do choose to disclose your HIV status to an employer, the employer is obliged to keep this information confidential. Legally, the employer cannot disclose information about your HIV status (or other medical information) to third parties (other employees, other employers, etc.) without your consent. Although this is the law, it cannot be said that all employers are aware of this.

If you do become diagnosed with HIV and you feel ready to speak with your friends or family, take some time to prepare yourself. You should consider all the different possible reactions people may have and the ways you might deal with them. Accept the fact, that some people will sometimes ask insensitive and even stupid questions. Try not to be defensive in your response.

Remind yourself that it's most likely a reflection of their own imbedded fears and that they are going through a process, too. If you are able, use it as an opportunity to educate and enlighten them, again, education is crucial for those people that are ignorant in regard to HIV, and will be quite surprised how little people know about this disease, even today. Try and give them the benefit of the doubt. It took me the greater part of my HIV journey to be able to overcome the blame that I had within myself and to learn that HIV is a disease, not a moral consequence of my past behavior.