When I first met José, he
was already intubated in the ICU, breathing only with the help of a ventilator.
Suffering severe pneumonia, he had been found unconscious in his apartment by the
landlord. José wore a crucifix around his neck, and had a business card for the
local LGBT center and a bottle of HIV medications in his pocket. There were no
documents to confirm his identity.
For weeks, my medical team
and I meticulously watched over José’s physical health. Twice, his lungs collapsed
and we put in several catheters to re-inflate them. Five times he went into
respiratory failure despite being on maximal mechanical support. We spent hours
manually pushing air through his breathing tube to keep him alive. A multitude
of continuous IV medications and blood products maintained a semblance of vital
signs. Drains in his bottom kept him clean and dry. We could not feed him because
he had persistent bloodstream infections. Every week, the quality assurance
team came by to ask: What are your care goals?
This is usually a question
my medical team and I would discuss with the patient or a patient’s family. But
José could not be woken up and no one ever came to see him. Fingerprinting
turned up no leads. No missing person’s report had been filed fitting his
description. We called the doctor who wrote José’s prescriptions. He gave us
the number for an emergency contact; however, that man said he had not seen or
heard from José for months and knew no personal information about him.
José’s profound disconnectedness
troubled me. Every day, his nurse and I evaluated all his tubes, medications,
and machine settings with extra care, trying to compensate for his loneliness.
I would squeeze his hand for a moment before I left, though I wondered if he was still with us in this world. The immensity of his solitude weighed on me. He
could pass away without anyone who had ever mattered to him having a clue.
How did José become so cut
off? Was it because he was gay or HIV positive or both or something else
altogether? Working in a safety net hospital, I have cared for many people like
José, who are hanging by mere threads in the margins of society. What kills them,
and often in heartbreaking ways, is not their medical illness. It’s their
social isolation. Stigma is the cultural stress that ultimately extinguishes
their lives.
When academics talk about
“vulnerable” populations, they are usually referring to people who have no
money, no power, or need public assistance to thrive. Health care disparities
are defined along demographic factors like ethnicity, income, employment,
education, and marital status. Ultimately though, what makes certain groups
more vulnerable than others is not the category they identify, or are
identified, with; it’s how connected they are to other human beings. Poor
people can belong to strong communities that will take care of them in times of
need, and thus be resilient. The same goes for people who are unemployed,
disabled or uneducated. People only end up on the street when they don’t have
anyone at all.
It is in this light that I
have come to appreciate marriage equality as an important and relevant policy
issue for our society. Beyond civil rights and basic human dignity, marriage
creates a connectedness that is protective against life’s unknowns. When crisis
strikes, it is a buffer that prevents people from ending up like José, who
essentially became a ward of the state. What cause does the public have to deny
equal benefits to consenting adults who want to make a lifelong commitment to
each other? Why do we still quibble over gender when so much collective good is
at stake?
As a whole, we have enough
intractable conflicts to contend with, without wasting valuable time and
resources to set up more stumbling blocks for ourselves. The ultimate goal of
government is to provide an infrastructure for diverse peoples to live
peacefully, happily, and freely together. Marriage equality on this level isn’t
about interpretations of religious text, historical precedent or legal
technicalities. Moreover, it is not about whether or not the private sex lives
of two people make us feel “icky” or not. As far as our elected officials are concerned,
marriage is a simple civil construct to bolster beneficial human connections
that spill over into all aspects of our lives - at work, in schools, in
hospitals, in neighborhoods and beyond. Pride can overcome individual shame,
but it takes all of us together to remove stigma. It’s time to end the
unnecessary suffering.
