Richard Kearns, the poet-activist at aids-write.org, writes about two issues that at first seem entirely unrelated: the CDC’s description of AIDS, and the designation of Daylight Saving Time. After his requisite lovely poem, he writes:
seventeen years ago i belonged to a la-based gay men’s HIV-positive ASYMPTOMATIC support group. ASYMPTOMATIC was the functional word: it distanced us as far as we could get from AIDS. it was having it without having it. fear and shame and stigma captured in a moment of language.had a love there whom i’ll call jerry, a blonde, blue-eyed hunk with fifty-two t-cells and a kiss that kept me alive. fifty-two t-cells made him happy. fifty was the cutoff. he didn’t have AIDS. he was ASYMPTOMATIC. he felt fine. he felt more than fine. i must agree he felt more than fine.
then came the day.
in an effort to make federal funding available to the shockingly growing national population of HIV-infected individuals, the us center for disease control (cdc) revised its AIDS “portrait” to include — among other things — persons with fewer than 200 t-4-cells. the cdc made this announcement on a monday. our support group met on tuesdays.
jerry came to the meeting in tears.
last week, he’d been free as a bee can fly, an HIV-positive ASYMPTOMATIC person. this week, he had AIDS. nothing else had changed. and everything.
that was the day jerry began to die. i will simplify the rest of his story and tell you he lasted about another year.
Later, Richard talks about the concept and history of Daylight Saving Time:
the us law by which we turn our clock forward in the spring and back in the fall is known as the uniform time act of 1966. the law does not require that anyone observe daylight saving time; all the law says is that if we are going to observe dst, it must be done uniformly.
while it’s not new to our lifetimes, the notion of dst has been around for most of this century and earlier. in the tradition of divinely-appointed kings who could not halt the tides by their bidding, it is an idea new with democracy, itself an exercise in social justice: an informed constituency can command the sun’s passage…
a democracy can command the time, it can alter the fall of daylight.
The implicit point that Richard makes with this juxtaposition of concepts is that definitions are powerful. The words we use to describe something can mean the difference between health and disease, between light and darkness. Jerry’s health status was exactly the same before and after the CDC’s pronouncement, but the new definition of a healthy t-cell count was essentially a death sentence. The sun is still in the same position in the sky as it would have been, whether we call it 6:00 or 7:00, but we can delay nighttime simply by changing the declared time.
Giving a name to something can also change its essence and give us power over it. People who were once thought to be getting senile as part of normal aging are now known to have Alzheimer’s Disease. Someone who hears nonexistent voices is not crazy but suffering from schizophrenia. Kids who once might just have been considered eccentric may now be diagnosed with Asperger’s Syndrome.
Beyond identifying and naming real patterns of phenomena, we can also use changes in definitions to reposition something that might be considered negative into a positive. I remember a handout I received once from a parenting workshop that showed how we could reframe what might be perceived as a negative trait in our children as a positive: so kids went from being “stubborn” to being “persistent,” “anxious” to “cautious,” “aggressive” to “assertive,” the quiet child is “thoughtful” and the chatterbox is “highly verbal.” All these characteristics that might drive parents crazy when the children are young could lead to future success as an adult if directed appropriately. Therapists often use this technique of relabeling negative characteristics to reflect an underlying strength and building on that in a positive way.
Conversely, smoking went from something that was a symbol of coolness to being a proxy for the tobacco industry’s desire to enslave teens in a lifelong addiction. Bronzed skin went from being a “healthy tan” to “sun damage.” The current battle over the definition of marriage is another example of the power of semantics to affect people’s everyday lives.
Words and their socially agreed-upon definitions often have implications beyond the dictionary. We can try to change those meanings through social marketing and harness the power of words to bring about positive health or social change.
Photo Credit: wiccked
dear nedra,
thank you for your kind excerpting of my long-winded piece. the irony of jerry’s death runs deep, and i wanted to share it with you.
while the cdc redefinition of AIDS may have been a death sentence for jerry, it was a life sentence for a lot of other people. that is part of my bitterness about it. many persons with AIDS (PWAs) (which includes me) see ourselves as living our lives in the cracks, between one definition and another. between one failed policy and the next. beatified and demonized.
chances are too that some opportunistic infection would have interrupted jerry’s sunny self-delusion in fairly short order. it does not mean i love him or miss him any less. or that the horror of his dying was less because he seemed foolish about it.
today, as a PWA over 50, i represent 10% of the gay HIVer population in the us. in the next 5-8 years, we will become 60% of the national population. a very different story.
the real question: what does it take to make a livable life?
one of the things it takes is language.
namaste
—richard kearns