Recently there was a good old-fashioned media smackdown when Matthew Ebert took an ax to my blog post "Why Are Some HIV-Positive Gay Men Grateful for Their Disease?" My basic premise was that you should be grateful that you have the strength, support and resources to accept, deal with and live with HIV, rather than being grateful for the virus as some kind of gift.
In Ebert's mind, my "words [were] loaded with hate and stigma, gay-male homophobic panic-in-the-streets sensationalist nonsense," and I am "a menace to HIV-positive people" because I was "dealing in deliberate distortions as a way of stigmatizing anyone with HIV." Oh, and apparently I was "blaming people for getting exposed to a virus [and] shaming them for wanting to live happy, healthy and full lives."
Really? I'm all that because I think it's obscene to label HIV as a gift? I wonder if all my friends who've died of AIDS thought of it as a "gift." I wonder if the brothers and sisters and mothers and fathers who attend the funerals of the 15,000 Americans who die of it every year are grateful for what Ebert thinks of as an exalted gift.
My previous posts about HIV directly contradict Ebert's claim that I blame or stigmatize HIV-positive folks. In "'Would You Have Sex With a Guy If You Knew He Was HIV-Positive?'" my answer was yes, I would. In "How to Get HIV Meds" I show those living with HIV without insurance how to get medication. In "Stop the HIV Slander" I rip HIV-negative guys for using despicable language in their online dating profiles (like "disease free for same"). POZ Magazine was so taken with my fierce defense of poz folks that they commissioned me to write a piece about the best way to reveal your HIV status on a date.
I accept your apology, Ebert.
In the post that you found so objectionable, I give voice to what a lot of people find alarming in the way we treat and speak of diseases. That post was heavily influenced by Barbara Ehrenreich's book Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. She had the idea for the book after she was diagnosed with breast cancer and realized, to her horror, that people like her, facing dire consequences, were supposed to look at their diagnosis as something they should be grateful for. I'd like to quote part of her book here. I invite you to substitute the words "HIV" or "AIDS" for the word "cancer":
In the most extreme characterization, breast cancer is not a problem at all, not even an annoyance -- it is a "gift," deserving of most heartfelt gratitude. One survivor turned author credits it with revelatory powers, writing in her book The Gift of Cancer: A Call to Awakening that "cancer is your ticket to your real life. Cancer is your passport to the life you were truly meant to live." And if that is not enough to make you want to go out and get an injection of live cancer cells, she insists, "Cancer will lead you to God. Let me say that again. Cancer is your connection to the Divine."
The effect of all this positive thinking is to transform breast cancer into a rite of passage -- not an injustice or a tragedy to rail against but a normal marker in the life cycle, like menopause or grandmotherhood.
When Barbara Ehrenreich rails against the description of a life-altering diagnosis as a "gift," nobody accuses her of blaming people with cancer for getting it, but somehow Ebert believes that when I say the same thing about HIV, I'm a "menace."
Ehrenreich goes on to describe the corrosive effect of looking at disease as a gift. Again, I invite you to substitute "HIV" or "AIDS" for "cancer" to better understand my point:
But rather than providing emotional sustenance, the sugarcoating of cancer can exact a dreadful cost. First, it requires the denial of understandable feelings of anger and fear, all of which must be buried under a cosmetic layer of cheer. This is a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining, but is not so easy on the afflicted.
She goes on to quote medical experts who rail against the kind of "benefit finding" (finding a benefit in a disease, treating it as a gift you should be grateful for) that Ebert is so fond of:
Two researchers on benefit finding report that the breast cancer patients they have worked with "have mentioned repeatedly that they view even well-intentioned efforts to encourage a benefit-finding as insensitive and inept. They are almost always interpreted as an unwelcome attempt to minimize the unique burdens and challenges that need to be overcome."
She goes on to quote a study that found the following:
[I]n complete contradiction to the tenets of positive thinking ... women who perceive more benefits from their cancer "tend to face a poorer quality of life -- including worse mental functioning -- compared with women who do not perceive benefits from the diagnosis."
In other words, women who saw cancer as a "gift" were worse-off than women who didn't.
And finally, one more quotation from her book: "Clearly, the failure to think positively can weigh on a cancer patient like a second disease."
Think before you write, Ebert. The pressure to sugarcoat HIV, the idea that you're supposed to think of it as a gift, weighs on the afflicted, as Ehrenreich says, "like a second disease."
Finally, I'd like to correct you, Matthew Ebert, on something you could have easily fact-checked. You refer to me as an HIV/AIDS writer three times in your post, as if I specialize in HIV as a topic. In fact, I write about sex, love and relationships and -- get this -- marketing. Yes, marketing. I have 12 books on the subjects of marketing or sex and relationships; not one deals with HIV in any significant way. While I've written close to 1,000 pieces in my sex-advice career, maybe 20 of them were about HIV. Characterizing me as an HIV/AIDS writer is so far from the truth that you'd need a teleportation machine to get near the orbit.
At the end of the day, we disagree on how to verbalize the struggles that HIV-positive men face, but we don't disagree on the dignity and respect of all gay men, whether they are HIV-negative or HIV-positive. But seriously, Ebert, try some decaf.
Michael Alvear is the author of The Best Gay Dating Apps of 2014.