A person with HIV tells why Stigma was relevant

Discussion in 'Star Trek: Enterprise' started by Peacemaker, Feb 6, 2003.

  1. Peacemaker

    Peacemaker Vice Admiral Admiral

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    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
     
  2. raleighrob

    raleighrob Fleet Captain Fleet Captain

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    Thanks for the post...I agree with tons of what you say.
    I too felt the story was good in talking about the stigmas of having a disease or being in a minority that's discriminated against. I'm glad they made this episode.

    Thanks again for the post...best to you!
     
  3. T'Parm

    T'Parm Captain Captain

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    Thank you for sharing your insight Peacemaker. I have always found you to be a voice of reason which is refreashing on this board.
     
  4. Archer4Trip

    Archer4Trip Fleet Captain Fleet Captain

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    Re: A person with HIV tells why Stigma was relevan

    <applause>

    Again, thanks.
     
  5. Guest

    Guest Guest

    Terrific post peacemaker. Although I have reservations about the show from a writers POV, no one could denigh your connection to the stories material. I worked with AIDS patients in a Toronto Hospital in 1989 and ya... your remarks hit the nail ...

    peacemaker Wrote: 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.

    Wonderful point! I wish you had written this ep. Glad you're doing well! Peace out. :)
     
  6. Admiral Buzzkill

    Admiral Buzzkill Fleet Admiral Admiral

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    Thanks for the insight, peacemaker.
     
  7. T'Bonz

    T'Bonz Romulan Curmudgeon Administrator

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    Thanks for the post.

    I worked once with a man with HIV. No, I didn't ask him how he got it. Did it really matter how? Folks who ask that kind of personal stuff as just as annoying as those who pepper pregnant women with personal questions. (My favorite was, when I was pregnant with my third, was "are you going to get fixed after this?" :lol: )

    Sometimes people are a bit too intrusive and thoughtless. I don't think all have malevolent intents, they just open mouth and insert foot.

    At any rate, they did a fine job with the show, it actually reminded me of a TOS show.
     
  8. Velocity

    Velocity Rear Admiral Rear Admiral

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    Sometimes people ask those questions just out of fear. It's a way of assuring themselves that "That couldn't happen to ME because . ."
     
  9. Caretaker

    Caretaker Commodore Premium Member

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    Thank you for speaking out, Peacemaker. I won't see the episode until Saturday, but when I do, I will go into it keeping what you have said here in mind. You have enlightened us all, and due to that, I feel like a slightly better person.

    Thank you.
     
  10. where'sSaavik?

    where'sSaavik? Vice Admiral Admiral

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    God bless, peacemaker. Don't think I ever thought about how fitting a handle that was for you till now. ;)

    All standard writing drawbacks aside, Stigma was a good episode. We can only hope the message is internalized by us all.
     
  11. Guest

    Guest Guest

    Thank you for you posting peacemaker, It indeed hits close to home, and I think the episode was great.

    Again, thank you for you wisdom and sharing - I hope Star Trek continues to venture into social issues relavent to our society today.

    - Clint
     
  12. VoyagerLuver

    VoyagerLuver Commander Red Shirt

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    I'm sorry, but to me and a lot of people it does matter where a person got the disease. I'm about to start the long road to becoming a doctor next year at college. In my opinion, I would have a lot more sympathy for someone who accidently got this disease than I would for someone who was out having unprotected sex or sharing needles. If a person has unprotected sex or uses drugs and shares needles, they obviously do not care about their health. Why should I care about their health then?

    It is the same thing in Africa. Those people are litterally wiping themselves out with AIDS. The uneducated people I have sympathy for. They don't have the understanding to protect themselves. The people who do know about how HIV and AIDS is transfered and don't protect against it do not desearve care. If a person WILLINGLY and with FULL KNOWLEDGE OF WHAT MIGHT HAPPEN continues to run the risk of getting a desease, it is their own damn fault.

    Only the uneducated and those who have protected themselves but still got AIDS desearve sympothathy.
     
  13. Guest

    Guest Guest

    :( 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.

    I apologize to the moderators of this forum. But this post upset me to no end. Ban me if you must.

    rikertroi :'(
     
  14. Guest

    Guest Guest

    Yeah! Thanx for all the compassion there VoyagerLuver... oh I mean DOCTOR. :rolleyes:
     
  15. Raoul the Red Shirt

    Raoul the Red Shirt Vice Admiral Admiral

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    I hope somewhere along your long road to becoming a doctor, you develop some empathy.
     
  16. clr2me

    clr2me Commodore Commodore

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    rikertroi:[/b]

    [/QUOTE]

    Hmm...what an explosive issue. I'm tempted to just let all this go, but then I would be guilty of marginalizing. So here goes. I'm going to give VoyagerLuver the benefit of the doubt when he says:

    "The people who do know about how HIV and AIDS is transfered and don't protect against it do not desearve care.",

    by allowing that he may be using the words "care" and "sympathy" interchangably. I think he means they deserve medical care as anyone with an illness deserves medical care, but that if they acquired the condition due to high risk behavior they don't necessarily deserve our sympathy.

    Whenever someone tells me they had an auto accident, I invariably ask how it happened. If they say for example they were sitting at a red light and got hit, I would sure feel a lot more sympathetic than if they said they had a few too many drinks ran through a light and smashed into someone.

    It's all about personal responsibility.

    Personally I don't give a damn if your straight, gay, bi, purple, or Vulcan, but if you smoke two packs a day and get lung cancer, or eat red meat till you have a coronary, or yes engage in high risk sexual behavior or share needles don't expect a lot of sympathy.

    Maybe the next time there's a car wreck, the driver drunk or not should just say "I'm not going to say how this happened BECAUSE I REFUSE TO ALLOW OTHERS THE POSSIBILITY OF SYMPATHIZING WITH ME OR AGAINST ME BASED SOLELY ON HOW this accident occured."

    Thanks for the post Peace, while I sypathize with your medical condition I can not in good conscience turn a blind eye to bad behavior and the unfortunate consequences it sometimes brings.
     
  17. TorontoTrekker

    TorontoTrekker Vice Admiral Admiral

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    Come to Canada, rikertroi. We could use more health care professionals like you.

    As for you, VoyagerLuver and Clr2Me, I am appalled! Why the manner in which somebody comes into your care makes a difference, I can't figure out. You will take, or have taken, an oath to heal the sick. That's all. Not to heal the sick whom you find to have gotten sick in an acceptable manner. You should be striving to save lives no matter what the circumstances. Otherwise, get the hell out of your profession and go pick up garbage or flip burgers or something.

    Oh, and VoyagerLuver, if you ever do become a doctor (and I doubt that you will - you will no doubt fail your ethics courses miserably based on your lack of empathy and compassion), let me know where you've set up your practice so that I can avoid you. I don't want you writing me any prescriptions with those atrocious spelling skills of yours - the pharmacist will end up giving me the wrong medication and I'll end up in Clr2Me's care. At this point, I'm not sure which would be worse.

    I can't believe I'm reading this tripe on a Star Trek BBS. Or did you two only tune in for the "kewl spase battals and nekkid chix?" You've completely missed the point of what Star Trek is all about.

    I apologize to the good people who read this diatribe, and to the mods, but this is the second time tonight I've gotten seriously angry at something somebody's posted... and I haven't even started reading TNZ yet.
     
  18. Pagodo

    Pagodo Lieutenant Commander Red Shirt

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    Isn't this discussion a proof of what Star Trek is all about?...

    ------------------------------------------

    Thank you for what you have said, peacemaker .
     
  19. Guest

    Guest Guest


    [/QUOTE]

    I'd like to think VoyagerLuver interchanged "care" and "sympathy", too, but I think its pretty obvious he/she didn't. OK, you two, you can't "turn a blind eye". So what the hell are you going to do about it? Think bad thoughts about these bad people? Vote for politicians to make laws to lock them all up in a prison so they can die where you don't have to watch it? Hand out questionaires to everyone you meet so you can determine if you want to associate with them?

    VoyagerLuver needs to get on the clue train. Start with this one:
    "That I will exercise my art
    Solely for the betterment and cure of my patients"
    This is part of what you'll have to swear to one day, bucko. I didn't see anything else in the oath that talked about playing God. I can see him now in the emergency room, "You there, bleeding to death, you weren't drunk when you got into that car? Yes? Nurse, throw this bum into the street!"
    I don't think sick people necessarily need our sympathy, but they definitely need treatment. No matter how you feel about how they may/may not have gotten sick, if its catching, its in your enlightened self interest to cure them, educate them, and make them less likely to hide in a dark corner and sneak, or worse lash out.
    I've no idea what religion you guys follow, but the one I was marginally raised in advised healing the sick, feeding the hungry, clothing the naked, visiting prisoners, among other things. I don't remember the teacher whose words were written in red advising, oh, give that naked guy the 3rd degree before you give him half your coat, make sure he's not "deserving" to freeze to death. I don't remember the story about the Good Samaratain, who was only really good because he personally didn't do those awful things we Jews say they do .
    But, hey, since you obviously don't believe that God's going to judge us, you'd better get cracking on it here and now. You can start with the concentration camps for those whose diseases are "catching", then move on to with holding treatment for fat people with heart conditions and diabetes.
     
  20. Guest

    Guest Guest

    A friend of my folks got Aids from receiving a bloodtransfusion, he had leukemia and needed them regularly. Allthough the ones responsible were prosecuted and lost their license to practice medicine forever, the damage was done.

    The most pathetic thing was that so many people treated him as gay, premiscuos and multiple people literally told him it was 'his own fault'. So many people don't know the first thing about it. I heard a general say 'clean people don't get aids. Only blacks and gays get it, my doctor said so.'

    Kudos to the producers of Enterprise for making an episode that handles the issue. I can't wait to see it!