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.
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