Friday, November 30, 2012

Searching for Hope on World AIDS Day

by Bruce Garner

World AIDS Day is December 1, this coming Saturday.  (The secular world did not consult the faith community when it chose a date to declare as World AIDS Day, so the observance is almost always in competition for either the first or second Sunday in Advent.)

I am painfully reminded of another Saturday in November, the Saturday after Thanksgiving in 1987.  It was the 28th, which falls on Wednesday this  I received a phone call letting me know that my dearest, closest and best friend had died from AIDS on Saturday, November 28, 1987.  I knew Alan's death was coming.  I had seen him the previous weekend, evening sitting by his hospital bedside the entire night after I arrived in Ft. Lauderdale where he lived.  Most of the night I prayed that God would take him home... would give him peace... would free him from the pain and confusion the virus was wreaking on him.  It would be yet another week after I returned home before my prayer would be answered.  

Alan and I were like brothers born from different mothers.  We spent vacations together and developed a bond so strong that whenever one called the other, we could tell within minutes if all was okay with the other.  His death was devastating... and in ways I didn't even realize for months.   My grief took time... and I didn't realize how much time I actually needed. Some of the anger still lingers... always will.

Those were the times during this epidemic that we never had a chance to grieve our losses. Those were the times of multiple funerals a week.  Those were the times when we wondered who would be next.  Those were the times when death was a constant companion.   I stopped counting the number of friends I had lost when the total reached 200.  It was, in more ways than we realized, like being in a war. We were in a war.  We were fighting a virus about which we knew little except that it seemed to have almost a hundred percent mortality rate.  And those were the times when politicians rarely uttered the word AIDS except in some derogatory context.  Those sick and dying were expendable... after all they were people of color, fags, intravenous drug users, sex workers and immigrants from an island where a nation called Haiti was located.  The only group impacted that generated any degree of empathy were those who relied on blood products to live... mostly hemophiliacs.  Even then there was the disdain shown to those with chronic health problems.

Those were the times when airlines dumped people with AIDS on the tarmac or sidewalk rather than take them as passengers.  Those were the times when a landlord could kick you out of your house or apartment just because you had AIDS.  Those were the times when you could be fired from a job... especially in public contact positions... for having AIDS. (Some people still can't comprehend that unless you are having a sexual relationship or swapping needles with your wait person, you will not get AIDS from them... imagine how it was then.)  Those were the times when funeral homes would not handle the body, much less the funeral of someone who had died from AIDS.

So what has changed since those first AIDS cases were reported in June 1981?   That depends on your perspective, I suppose.

There are medications available... very expensive medications.  Yet their efficacy is highly dependent on a certain level of literacy and ability to comprehend the regimen required for them to fight the virus.  If you read at a second grade level, the chances are good that you have no clue what you should be doing with your meds and why, much less the consequences of not following the regimen you have been given.  And if you don't have significant resources or can qualify for compassionate care resources for the medications or don't have access to insurance or Medicaid or Medicare, and on and on and on... there may as well not be any medications.

There have been great advances in the treatment of what we now call HIV.   See above paragraph before proceeding.  

It is fairly rare to hear of someone being evicted for having HIV... rather they get evicted because trying to treat the condition has exhausted their resources and they become dependent on public assistance for their income.   We do have laws prohibiting most forms of discrimination based on having HIV... but as always there are those who get around the law by careful use of language.

We do have more effective prevention education programs... provided you live in a state that allows something other than abstinence only education.  Yet even with improved prevention education, some entire communities have failed to benefit from it.  You have to acknowledge the practice of the behaviors that transmit HIV before you can teach how to avoid infection.  Dishonesty can be deadly... regardless of the reason.  The phrase from the early years "Silence equals Death" takes on a different meaning when the topic itself cannot even be discussed.  And yes I am speaking the truth to a pseudo power that still claims that some populations cannot be open about who they are and what they do.  The consequences are still death.  Tell the truth and shame the devil!

Infection rates have slowed in many areas of our own country, not in others.  The geographic area that makes up Province IV of The Episcopal Church continues to have rising infections rates, never having had a time when they decreased.  It is the cradle of HIV infection these days.   Circumstances come together to provide the perfect storm for ongoing HIV infection: poverty, illiteracy, ignorance, racism, sexism, homophobia, apathy... need I go on with the list?  We are rapidly approaching a situation eerily similar to the mid-1980's again.  This time the fastest growing group of infected are young, gay males of color (even though some claim such a group does not exist).  Sadly however, as the problem continues to grow, the resources that were pulled together in the early days of the epidemic are not there... they have been exhausted... private resources, government resources.

Notice that I have confined my comments to the situation in The United States?   Contrary to popular myth, HIV/AIDS has NOT moved overseas.   It still lives and thrives among us.  Yet there has been a substantial change in how we see or do not see those infected.  Most are people of color.  How many of our congregations have significant numbers of people of color in them.  There are exceptions....but the norm is still pretty white.   What we no longer see, we no longer think exists... at least that's the way it seems to be for most of us... regardless of the subject.  The Episcopal Church has even bought into that myth.   Few dioceses have commissions on AIDS anymore or any ministry to those with HIV.  The various forms of the Commission/Committee on AIDS of the church, of Executive Council, of whatever have ceased to exist.  We don't fund what we do not see.  Although they have stated reasons they consider legitimate, even Episcopal Relief and Development does not address HIV/AIDS on the domestic front... only overseas.  We do not see those who do not have a face that we find familiar.

Clearly I do not find much reason to find real hope in this continuing health problem that impacts every one of us.  And obviously, my comments contain a touch of negativity if not bitterness.  I will not deny either nor will I shrink from that stance.  I see it from a perspective much different than most.  Aside from losing so many friends, I have also served on non-profit board after non-profit board for organizations struggling to address an issue that so many do not see a need to address.  I've watched as public funding gets cut for medications, treatment and prevention education.  I've served on state wide bodies whose mission was to create a comprehensive response to HIV/AIDS, only to have good ideas torpedoed by politics.  So no, I do not find much real hope.  

I made a panel for the Names Project AIDS Memorial Quilt for my friend Alan.  A picture of it hangs in my home.  I once made the comment in a presentation that "when" a panel was made for me... not "if" a panel was made for me.  I don't know if it was the proverbial Freudian slip or not.   I do know that I have now lived with HIV for over 30 years.  By the grace of God, prayer, good medications and good medical treatment and a streak of stubbornness I plan to fulfill my doctor's prediction that I would die from old age and not from AIDS.  

Many portions of the AIDS Quilt will be on display around the country on December 1.  Will that move us to action?  Will it make us angry instead of just sad?  Or will we just make a note that we have seen it and allow it to go back to the warehouse where it lives until this time next year... perhaps hoping someone might do something?   The Quilt really isn't like the Christmas decorations we trot out once a year... the problem exists all year long every year.   But then again, how many of us only think about the gift of the Incarnation other than once a year?

December 1 is World AIDS Day.  What will we individually do on that day?   Was it Mother Jones who said "pray for the dead but fight like hell for the living?"  I don’t know, but it sounds like a good plan to me.  But then I am reminded of a carpenter from Nazareth who told those who were burdened and heavy laden to come to Him and He would give them rest.  He also called upon each of us to do as the Samaritan did upon finding a man beaten and bloody on the roadside:  Love your neighbor as you love yourself.


Bruce Garner
Provincial Coordinator for Province IV, Integrity USA
Former Board Member and Chair of the National Episcopal AIDS Coalition
Former Member of the Standing Commission on AIDS (now defunct)
Former Member of the Executive Council Committee on HIV/AIDS (now defunct)


susankay said...

I had a dear friend also named Alan who died of AIDS before they named it. I still remember his joy at sobriety turning to bewilderment at Karposis. I still cry

Friend Grief said...

Beautiful, powerful testimony that I can relate to way too much.

People need to get angry again, like we were in the 80s and early 90s. Apathy has sentenced more people to die from AIDS than the virus itself.

Unknown said...

It is stunning, dominant demonstration that I can relate the way too much.

Walking Aids