I posted this in a thread about why Stigma did not work.
However, I've decided to make this a separate thread, because it may give you all some inside knowledge about living with HIV. I hope you'll consider it and, those of you who don't think the allegory was relevant to this time will, by considering what a real person with HIV deals with himself and has seen others deal with as a person with HIV and a profession who worked in HIV education and HIV services from 1992 until 2000 has seen and continues to see, will change your minds. For me, Stigma did give me the courage to come here and speak out.
People with HIV are STILL treated as a marginalized group in this nation. I know, because I face a lot of it every day, and I've had to deal with it for nearly ten years now.
This episode was about the STIGMA that comes with HIV infection. The largest part was NOT about research, it was meant to make you negatives understand what positives feel about each other and perceive your perception of us.
How does it reflect us now? Throughout this episode T'Pol refused to disclose how she got infected, because in so doing she knew she'd gain the sympathy of her accusers, but they would continue to withhold their sympathy from "the minority." She was so right, and this so reflects the way we people with HIV are treated right this very minute.
Oh, yes, it appears we're just part of the crowd now, but we're not. Our lives are distinctly different than yours. Everytime I disclose my HIV status, somebody asks "How did you get it?" I've always been at a loss to find the words to tell them why I don't want to tell them, and tonight, THANKS TO THIS EPISODE, I have words that describe my thoughts. I don't want to tell them, not because I'm ashamed of my infection...everybody that I know knows I have HIV, because I talk abt. it matter of factly; I don't tell them how BECAUSE I REFUSE TO ALLOW OTHERS THE POSSIBILITY OF SYMPATHIZING WITH ME OR AGAINST ME BASED SOLELY ON HOW I GOT A DISEASE. The question, "How did you get it," almost always has insinuated that the person that got it via an undesirable manner and so the person that wants to know how s/he got it is actually trying to determine whether to withhold their sympathies. They use it as a way to make themselves feel better abt. their own selves and perpetuate their bigotry against gays, drug users, sometimes women, sometimes other minorities. It is a disease of the marginalized in this nation, and "How did you get it" matters to so many because they will use this knowledge as fodder for their bigotry. All the while we positives do not make such distinctions among ourselves. We have HIV, we are living with it, and we don't see ourselves any better or any worse than the other. Having HIV changes you that way. I wish more of you truly understood that.
I am LIVING with HIV. Yes, for me, it IS a manageable illness. I go to the gym five or six days a week, and I'm probably heathier now than most people on this board, even tho. I only have 300 Tcells/cubic mL of blood left.
This story still needs to be told. People with HIV are STILL treated poorly. People are complacent about this illness in America. However, they are still as bigoted about it as ever. I've lived in small town America and big city America. I've found the same attitudes abound in either place and have changed very little over the years. No, it's not the mid80's, but if anybody here thinks that we're many steps up the evolutionary ladder in the way we think of people with HIV in America, you are grossly misinformed.
The entire point of the allegory is to remind us that you negatives still treat us the way you did in the 80's. The only difference is now is that there are two views not one. Back then, it was pure marginalization. Now its mainstreaming. We positives do have a separate life experience than the rest of you. However, we've gone from being wholly marginalized on the one hand to being totally mainstreamed and our life experience ignored.
We positives don't see ourselves by our mode of transmission. However, we don't see our lives as ordinary either. We are people living with HIV. It is NOT a normal condition. However, it is still a condition that carries a stigma, and it shows everytime somebody asks "How did you get it?" with the intent of using the answer as fuel for their bigotry, which is still done all over this nation today.
This attitude exists among gays. I know some gay men that are HIV positive and live in large "gay" cities, but they fear disclosing their HIV status to anybody that does not "need" to know, because other gay men will use it against them in purely social situations. There is an entire gay community of negatives and another one of positives now, and they are at odds, because of the "blame the victim" attitude of a lot of HIV negative gay men.
This attitude persists among heterosexuals, who label other heterosexuals "promiscuous" if they got HIV via unprotected sex. I know some women who got it from their husbands, but fear disclosing their HIV status to anyone beyond their immediate circle of friends because they fear that their marriages will be viewed as failures and shams. People tend to come out "for" you or "against" you if you are heterosexual and HIV positive. Some label you as "promiscous" so you "deserve" what you got or a "failure" because your husband or wife was running around on you. Think of what happens to couples as they go through divorces. Watch how their friends take sides. Its the same dynamic, just turned up tenfold.
For drug users, who are already deemed bad people and failures by a large portion of our society, disclosing their HIV status is a big deal, for the same reasons. This is really bad, bec. people do drugs for a reason...low self esteem and self-worth, usually. Telling people they are bad only reinforces their drug use. Here's a group for whom the stigma of being HIV positive persists to a detrimental state, because it creates a self-fulfilling prophecy that ultimately decimates their health.
For members of minorities, being HIV positive carries a stimga too. Try being gay, black, male and HIV positive. It's not fun, bec. being a gay male is stigmatized enough in the African American community. Now add being HIV positive. Then try dealing with racism on top of it, not just if you are a gay black male, but if you are just HIV positive and black. Again, people use it as fodder for their bigotry.
Finally, try being any one of these and a Christian. There are conservative Christians out there who are totally unable to disclose their HIV status to their brothers and sisters in church for fear of being shunned. Being a Christian and HIV positive carries with it the stigmas of all the other groups plus the ignorance of the old days, because having HIV is sometimes viewed as God's just punishment on you. Alternatively, the evangelical Christian church is still a bastion of plain factual ignorance. The last time I went to do an AIDS talk in a church was in a church with over FIVE THOUSAND members, many of whom were doctors and nurses. They told me how glad they were I came because the questions their fellow church members asked had more to do with casual contact than anything else. There is STILL a large part of the population in churches, not to mention the entire population of this nation, that knows how you really get HIV but who also still don't understand that you don't get it via swimming pools and mosquito bites or other such means.
To live with HIV is too often to live with fear. (For both positives and negatives this is true on many levels). Some people may think we positives "should" live with HIV bec. we "deserve" it. However NOBODY should have to live in or with fear.
Stigma did a SUPER job. Maybe, as T'Pol said, it will encourage others to speak out
However, I've decided to make this a separate thread, because it may give you all some inside knowledge about living with HIV. I hope you'll consider it and, those of you who don't think the allegory was relevant to this time will, by considering what a real person with HIV deals with himself and has seen others deal with as a person with HIV and a profession who worked in HIV education and HIV services from 1992 until 2000 has seen and continues to see, will change your minds. For me, Stigma did give me the courage to come here and speak out.
People with HIV are STILL treated as a marginalized group in this nation. I know, because I face a lot of it every day, and I've had to deal with it for nearly ten years now.
This episode was about the STIGMA that comes with HIV infection. The largest part was NOT about research, it was meant to make you negatives understand what positives feel about each other and perceive your perception of us.
How does it reflect us now? Throughout this episode T'Pol refused to disclose how she got infected, because in so doing she knew she'd gain the sympathy of her accusers, but they would continue to withhold their sympathy from "the minority." She was so right, and this so reflects the way we people with HIV are treated right this very minute.
Oh, yes, it appears we're just part of the crowd now, but we're not. Our lives are distinctly different than yours. Everytime I disclose my HIV status, somebody asks "How did you get it?" I've always been at a loss to find the words to tell them why I don't want to tell them, and tonight, THANKS TO THIS EPISODE, I have words that describe my thoughts. I don't want to tell them, not because I'm ashamed of my infection...everybody that I know knows I have HIV, because I talk abt. it matter of factly; I don't tell them how BECAUSE I REFUSE TO ALLOW OTHERS THE POSSIBILITY OF SYMPATHIZING WITH ME OR AGAINST ME BASED SOLELY ON HOW I GOT A DISEASE. The question, "How did you get it," almost always has insinuated that the person that got it via an undesirable manner and so the person that wants to know how s/he got it is actually trying to determine whether to withhold their sympathies. They use it as a way to make themselves feel better abt. their own selves and perpetuate their bigotry against gays, drug users, sometimes women, sometimes other minorities. It is a disease of the marginalized in this nation, and "How did you get it" matters to so many because they will use this knowledge as fodder for their bigotry. All the while we positives do not make such distinctions among ourselves. We have HIV, we are living with it, and we don't see ourselves any better or any worse than the other. Having HIV changes you that way. I wish more of you truly understood that.
I am LIVING with HIV. Yes, for me, it IS a manageable illness. I go to the gym five or six days a week, and I'm probably heathier now than most people on this board, even tho. I only have 300 Tcells/cubic mL of blood left.
This story still needs to be told. People with HIV are STILL treated poorly. People are complacent about this illness in America. However, they are still as bigoted about it as ever. I've lived in small town America and big city America. I've found the same attitudes abound in either place and have changed very little over the years. No, it's not the mid80's, but if anybody here thinks that we're many steps up the evolutionary ladder in the way we think of people with HIV in America, you are grossly misinformed.
The entire point of the allegory is to remind us that you negatives still treat us the way you did in the 80's. The only difference is now is that there are two views not one. Back then, it was pure marginalization. Now its mainstreaming. We positives do have a separate life experience than the rest of you. However, we've gone from being wholly marginalized on the one hand to being totally mainstreamed and our life experience ignored.
We positives don't see ourselves by our mode of transmission. However, we don't see our lives as ordinary either. We are people living with HIV. It is NOT a normal condition. However, it is still a condition that carries a stigma, and it shows everytime somebody asks "How did you get it?" with the intent of using the answer as fuel for their bigotry, which is still done all over this nation today.
This attitude exists among gays. I know some gay men that are HIV positive and live in large "gay" cities, but they fear disclosing their HIV status to anybody that does not "need" to know, because other gay men will use it against them in purely social situations. There is an entire gay community of negatives and another one of positives now, and they are at odds, because of the "blame the victim" attitude of a lot of HIV negative gay men.
This attitude persists among heterosexuals, who label other heterosexuals "promiscuous" if they got HIV via unprotected sex. I know some women who got it from their husbands, but fear disclosing their HIV status to anyone beyond their immediate circle of friends because they fear that their marriages will be viewed as failures and shams. People tend to come out "for" you or "against" you if you are heterosexual and HIV positive. Some label you as "promiscous" so you "deserve" what you got or a "failure" because your husband or wife was running around on you. Think of what happens to couples as they go through divorces. Watch how their friends take sides. Its the same dynamic, just turned up tenfold.
For drug users, who are already deemed bad people and failures by a large portion of our society, disclosing their HIV status is a big deal, for the same reasons. This is really bad, bec. people do drugs for a reason...low self esteem and self-worth, usually. Telling people they are bad only reinforces their drug use. Here's a group for whom the stigma of being HIV positive persists to a detrimental state, because it creates a self-fulfilling prophecy that ultimately decimates their health.
For members of minorities, being HIV positive carries a stimga too. Try being gay, black, male and HIV positive. It's not fun, bec. being a gay male is stigmatized enough in the African American community. Now add being HIV positive. Then try dealing with racism on top of it, not just if you are a gay black male, but if you are just HIV positive and black. Again, people use it as fodder for their bigotry.
Finally, try being any one of these and a Christian. There are conservative Christians out there who are totally unable to disclose their HIV status to their brothers and sisters in church for fear of being shunned. Being a Christian and HIV positive carries with it the stigmas of all the other groups plus the ignorance of the old days, because having HIV is sometimes viewed as God's just punishment on you. Alternatively, the evangelical Christian church is still a bastion of plain factual ignorance. The last time I went to do an AIDS talk in a church was in a church with over FIVE THOUSAND members, many of whom were doctors and nurses. They told me how glad they were I came because the questions their fellow church members asked had more to do with casual contact than anything else. There is STILL a large part of the population in churches, not to mention the entire population of this nation, that knows how you really get HIV but who also still don't understand that you don't get it via swimming pools and mosquito bites or other such means.
To live with HIV is too often to live with fear. (For both positives and negatives this is true on many levels). Some people may think we positives "should" live with HIV bec. we "deserve" it. However NOBODY should have to live in or with fear.
Stigma did a SUPER job. Maybe, as T'Pol said, it will encourage others to speak out
)
In my 23 years as a registered nurse/public health nurse, I have never, and I mean never refused to treat anyone based on some misguided belief that "they deserved to get sick, therefore let them die." If this is an example of the attitude of what the upcoming doctors will be, then it's time for me to retire. I refuse to be a part of a compassion-less medical community. 
