"Dis Queens" Pissed Queens
How unattractive, this covetous backlash against the alleged AIDS welfare queens ("Dissing Disability Queens," October 2001). Is no theater of life immune from the clawing nails and hair pulling of gay-to-gay interaction? Those who toil to keep the HIV-infected alive diminish only themselves when they then cry foul upon succeeding.
Staying well with HIV is a full-time engagement. And if that is not burdening enough, consider this: People living with HIV, however successfully, awaken each morning with the knowledge that theirs will not be a life of average (rich world) duration. How to mete out the remaining days? Some will search for renewed meaning; others, peace, physical fitness, leisure and, yes, even glamour or acquisition. Is it our place to second-guess these choices? We would do better to address the very real fears that make reintegration into the workaday world so threatening for many living with HIV, myself included.
-- Mike Barr, New York City
The recent POZ article "Dissing Disability Queens" -- for which I was a source -- wasn't interested in my views on disability, but only in sensationalism. Disability is a critically important issue for HIV positive people, one fraught with uncertainty, grave risks and unforeseen consequences. Instead of giving the subject the respect it deserves, POZ took the low road, fully intending to anger readers.
POZ asked if I believed there were people abusing the disability system. Of course there are. And yes -- however few in number, such people make me angry because they endanger the system for everyone who truly needs it. All social programs have their abusers. The one concrete example POZ cited was highly atypical: Very few people with HIV on disability get exorbitant benefits or live gym-toned lives on the party circuit. Most struggle with complex drug regimens, side effects and uncertain futures, while not getting nearly enough to live on. Supplemental income endangers their coverage as well as their health insurance. The writer gave me no opportunity to talk about such substantive issues, and certainly no hint of the article's tone, salacious title and pull quotes. It did, however, rustle up others to take the "good guy" role. Funny thing, though, I agree with everything the others said, and would happily have changed roles with them in the article.
In short, the article completely misconstrues my views on disability. I greatly regret having been part of this article and have informed POZ that I will no longer respond to inquiries from its writers. Nor will I write for the magazine myself unless it changes its style.
-- Martin Delaney, San Francisco
As the author of HIV Law, longtime AIDS advocate and 11-year veteran of the virus now on partial disability, I cannot express strongly enough my dismay with "Dissing Disability Queens" (October 2001). It's so easy to single out a group, turn individuals into a one-dimensional cartoon and then kick them when they're down by trashing the stereotype.
As the writer correctly notes, HIV claimants are indeed being treated with increasing skepticism, hostility and intolerance as we irritate insurers by outliving their actuarial expectations. Simply put, our prolonged existence is incompatible with their bottom lines. Nearly every day in my law practice I receive desperate calls from ill people being unfairly jerked around by their disability insurers. The industry, already eager to typecast HIVers as self-indulgent malingerers, has now been given by POZ additional "evidence" to be used as ammunition against those least able to defend themselves.
-- Paul Hampton Crockett, Miami
I have been on SSI/SSA disability since 1994. Although I've battled a case of non-Hodgkin's lymphoma this past year and other HIV problems, I managed to complete my master's degree in social work and get a job with a nonprofit doing AIDS case management.
About a month after I started, the full-time hours began to take their toll. I came out to my supervisor about having a disability and informed her that I would need time off for doctor's appointments. She informed me that I could use my lunch hour and take a little extra time for medical appointments.
A month later, I realized that working full time was now critically impossible. I had my oncologist write a generic letter stating that I have a disability and that I need to reduce my work hours.
When I presented the letter to my supervisor, she told me that she would have to inform the administration of my HIV status so that they could grant me an accommodation.
I was given written notice that my request would not be granted. A couple of weeks later, my supervisor informed me that they were hiring for my position. I was informed not only that the agency was not legally required to give me an accommodation (because I had failed to disclose that I had a disability prior to the agency hiring me), but also that my having HIV is considered a preexisting condition. Further, I was informed that if I had disclosed that I had a disability when interviewed, they wouldn't have hired me.
I am now fighting to keep my job. I'm a gay latino with a master's degree in liberal San Francisco who is facing a battle with a nonprofit employer. If this can happen to me, it can happen to anyone. I frankly don't blame "disability queens" for staying on disability.
-- Eugene Borgetti, MSW, San Francisco
I am a 45-year-old man who has had HIV for over 15 years. About two and a half years ago I stopped working because I was exhausted. After many years of juggling my health care and a full-time job in a highly stressful corporate atmosphere, it was time to step off the treadmill in favor of taking care of myself.
Now I feel better. I no longer shrug off the gym. I started yoga, acupuncture and psychotherapy. At my stage in fighting HIV, and in light of the drugs I was being given, I no longer felt like these endeavors were options -- they were things I had to do. As a result, I now look better -- like someone well enough to work. But I only look this way because I don't work. My full-time job has become taking care of myself.
-- Paul K., San Francisco
As HIV coordinator for our county, I don't have any clients who are on private disability, but I have several who are on SSDI. I know that some of them might be capable of working part time or even full time. But if they are totally med compliant and trying to keep themselves healthy, they are also living with all the horrific side effects of their medications and the conscious realization that a bad cold or case of bronchitis can set them back and put them in the hospital. While I see the reasoning behind the insurance companies wanting to get people off disability insurance and back into the work force, the reality of living with HIV/AIDS is that this is not necessarily a good idea.
-- Wilda Finn, New Bern, North Carolina
I have been reading this magazine for 11 years [sic], and I cannot believe the load of crap that I just finished reading ("Vagina Monologues," October 2001)! Heterosexual women can give their male sexual partners HIV, which may develop into AIDS. I did. I worked in surgery before anybody had heard of AIDS. I received an unexpected bloodbath from a man who had a severely bleeding ulcer. Eventually I was informed that this man had died of AIDS, but not until after my son was born sickly and diagnosed with AIDS. When I was six months' pregnant, my husband tested negative for HIV. My son was diagnosed at 18 months. Soon after I was, too -- and prayed I hadn't infected my husband. But I had.
You women who believe you can't give your partner AIDS are fooling yourselves. Inform your partners, use protection and save yourselves from doing time in prison for attempted murder. Take it from somebody who lives everyday with the guilt from not being tested, and seeing my husband and son suffer for it.
-- Name Withheld, Via the Internet
The article "Vagina Monologues" stating that women cannot pass HIV to men is completely outrageous and completely false. I, as a positive heterosexual male who has never used IV drugs nor had a homosexual experience, know firsthand that this article completely defeats all the efforts I have made to speak to high-school children letting them know it can happen to them. I demand a retraction. I will never pick up or purchase another issue of your magazine from this point on, and I will encourage others to do the same. Fuck you very much.
-- Name Withheld, Via the Internet
To say that women don't give HIV is straight bullshit. I've been positive for six years and know for a fact that I got this disease from a woman. She was positive and didn't tell me for a month into our relationship, all the time having unprotected sex with me. How can a national magazine say this kind of shit to people?
-- Ben Benard, Via the Internet
I've been living with HIV since '95, and got it from having unprotected sex with prostitutes on a weekly bases. Furthermore, not only did I catch HIV -- I caught gonorrhea and herpes. You should research before you print.
-- Daniel, Via the Internet
I am a straight -- but not narrow -- man who acquired HIV from my wife. I am not gay and have never shot up drugs. It is totally irresponsible for your magazine to claim that women do not give HIV to men. Guess again. Who does your research -- the Christian Right? Or Dr. Laura?
-- Michael Trauth, Louisville, Kentucky
I just wanted to let you know how excited I was to read "Vagina Monologues." I have long believed that the chance of a woman transmitting the virus to a man is very slim. As a heterosexual woman with HIV who has dated "hetero" men with HIV, it always seemed to come out that the men have had a gay experience in the past. I appreciate these SMART women not being afraid to speak their mind. A lot of my positive girlfriends were also very happy to read this article.
Thank you for bringing this topic up -- it is what a lot of us have always believed.
-- Linda, Via the Internet
I appreciated the article on female-to-male HIV transmission. As a woman who was infected through unprotected sex, it was a tremendous relief to know that what I knew to be true had finally been dug up and documented.
Whenever a doctor asks me how I contracted HIV, I always get the same response: "But were you an IV drug user?" Well, yes, I was -- but I tested negative for the virus while in drug treatment. It wasn't until I was two years clean that I became positive in a relationship with someone who did not tell me he was positive.
The natural assumption is that it was my fault -- I infected him. This article has lifted the burden of guilt from all positive women and brought the issue into the light. For that I'm truly grateful.
-- Denise D., Via the Internet
Desperately Seeking a Liver Giver
In "Liver Lovers" (POZ, February/March 2001), you read about PWA Vinny Allegrini's pioneering journey toward a liver transplant. Here's an update: Vinny is doing pretty well, at least for the time being, but he's still without a transplant. The bad news is, he needs a living donor. The good news is, his insurance company approved coverage for this expensive procedure -- once we identify a new donor. Hey, it could be you!
The donor will undergo surgery to donate 60 percent of his or her liver (it grows back to full size in about a month). You must be between 18 and 55, with blood type B (Vinny's type) or O (universal donor). Rh factor (positive or negative) doesn't matter. Nor does sex, but your liver must be as big or bigger than Vinny's. (He's five feet ten and 170 pounds; still, body size doesn't always determine liver size.) You must be in overall good health, negative for both HIV and hepatitis, and not significantly overweight. There is no cost to the donor for either the initial medical evaluation or the actual transplant.
Aiming to be an angel? For more info, contact Mark de Solla Price by e-mail at MarkP@poz.com, or write to 332 Bleecker St., PMB 212, New York, NY 10014.
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