by Mary Phillips, HIV/AIDS Activist, Pres. JMH CAB
Confidentiality
What does this word mean? Well to me it means keep it between you and me; it means if you find out something about me, please don’t tell the world. In other words, keep it quiet please.
Why do I need confidentiality in my life? Well, with all the judgment the goes on out there; regarding my being an innocent victim or one of those who deserve what they got, I don’t have the energy to deal with all the hate and rejection that can come with an HIV diagnosis.
I cringe, every time I remember, the last time I walked into my Walgreen’s pharmacy and the pharmacist says out loud in front of everyone, “We don’t have your Norvir, your HIV thing!” Everyone stopped what they were doing and looked right at me. A lot of people have dropped taking their medicines, and stopped going to the drugstore primarily because of that kind of thing.
The stigmatization caused by the insensitive and uneducated comments of health care professionals and my “fears” is unbearable. These professionals should know better about how to handle HIV/AIDS issues with more tact.
People that do not understand and are uneducated about the AIDS virus can be very mean. It’s important that people respect your right to privacy. The issues of confidentiality are relevant even if you want to be open about your AIDS diagnosis.
I remember going into the
These are supposed to be professional people caring for us, and I don’t think these people are taught confidentiality, they think that confidentiality is hiding the charts so that no one can see, but it’s more than that. It also refers to “loose talking”, sometimes these nurses are in the hall way right in front of the patient’s room and the patients inside the room can hear them talking.
Why is it, that when you work a delicate job as nursing, you have to do those kind of things? During that same stay, I overheard as I passed by the nursing station, “Why didn’t they put her in the isolation room, she does not belong on the floor?” I really was floored by that comment; an isolation room is for people that have an easily transmitted infectious diseases. AIDS is not one of those, we breathing the same air and lying in a bed next to somebody is not a problem.
I was being stigmatized right there in the hospital, and it does not matter what color you are, people think that if you have HIV; your dirty, you got it, your this, and your that….because they don’t care how you got it, you have it, that’s all they want to know and that is all that matters. I think that if I was Hispanic or White they would have treated me the same way.
There are some basic things that are causative of these problems; the bad feelings that are carried over, the way people feel about IV drug users, homosexuals, and sex workers, fear of transmission issues, and lack of education. You would think that in an institution like a hospital there would be good ongoing education about HIV and AIDS, confidentiality and the laws in Florida, cultural competency and how to handle yourself with your patients, how to communicate with your clients, and patient relations.
by Mary Phillips, HIV/AIDS Activist, Pres. JMH CAB
Stigma
I want to direct your attention to the topic of Stigma. You know, when this epidemic got started, there were four groups of people that were labeled into high risk groups, and anyone who was part of these four groups was immediately and forever associated with the phrase, “they have HIV/AIDS”!
Those groups were the Homosexuals, the Hemophiliacs, the Haitians, and the Heroin Users. People used to call these groups, the four H club…..how IRONIC! Ever since these groups were pointed out by the government, people belonging to these groups, faced having to deal with many of society’s culturally embedded bad feelings towards them and evil stereotypes. Never you mind that, they had to deal with the fear of death from AIDS, and everything that this process entailed.
Some people dealt with AIDS issues from a point of view of compassion for the sick and this was the real deep source of their feelings. Others viewed the epidemic from the point of view of Christian works of Mercy…feed the hungry, clothe the naked, visit the prisoner, bury the dead, help those in need, visit the sick, give drink to the thirsty, and welcome the stranger.
Yet some other intolerant people were conflicted, and felt both the love and the hate. Those people looked at the high risk groups, and they broke them up into love and hate groups and thus the HIV STIGMA was birthed. It is easy to hate homosexuals and heroin users, especially if you come from a culture that supports hate towards gays and drug users because they are undesirables. Even the Haitians were caught up in the hate side, some bigoted people would say, “Let them die, they’re only black Haitians, promiscuous Gays and criminal Drug users, they deserve what they’ve got.
These backward thinking, discriminatory and bigoted thoughts still prevail. In some minds, the story becomes, “oh they deserve what they have because they are being punished by God”. These ideas go so far, that individuals started to sort out people with AIDS into the ones that deserve it and the innocent victims.
Yeah this started happening when society did not know how to handle the babies with HIV, born of infected mothers that got their infection through sex or needles. The babies could not be shunned and/or ostracized, they became no-fault victims, and all others were sinners. The hemophiliacs also fell into this innocent victim category since they got their infection from contaminated blood products; many thought it was no fault of theirs.
Well as long as people hate Blacks, Homosexuals and Drug users the HIV/AIDS stigma will be alive and well. People with AIDS will still be afraid of what people may really be thinking and feeling towards them and fear will prevail.
Please, the only way we will be able to overcome this is by talking about it, then people don’t understand why the confidentiality laws are so important to people with AIDS. I don’t want to be hated or discriminated because I got HIV and have AIDS.