Editor’s note: This commentary is by Linda Mulley, an autism educator who has taught at University of Vermont, Dartmouth College and the Vermont Higher Education Collaborative; she is the co-author of “All Children Matter.” This piece was first published in the Valley News on Sept. 9.
Thirty years ago, the AIDS Memorial Quilt project documented the many lives lost to AIDS and raised awareness of the devastations of this disease. This grassroots movement started by a handful of people in San Francisco grew to attract the attention of the entire nation and to raise millions for AIDS service organizations. Perhaps it’s time we considered a new quilt project to commemorate in a similar way those lost to substance use disorder.
The number of drug overdose deaths topped 52,000 in 2015. This figure is considered an underestimation, but even if bang-on accurate, drug overdose is now the leading cause of accidental death in the U.S. The demographic cuts across class, race and gender; however, those in the prime of their lives, between the ages of 24 and 54, are most likely to die by overdose.
From early reports, 2016 deaths will exceed the 2015 figure by a large margin, possibly reaching 60,000. The trend, it seems, is ever upward. As CNN reported recently, “America is enduring a death toll equal to 9/11 every three weeks.”
Using the 2015 figure of 52,000 deaths, simple math tells us that more than 4,300 people die every month and more than 1,000 die every week from a drug overdose. Amid all this relentless and senseless dying, the wonder is we’re not more concerned as a nation than we are. In contrast, according to the World Health Organization, the Zika virus was implicated in two deaths in the United States in 2016. Nonetheless, the outbreak prompted Congress to appropriate $589 million for prevention and treatment, most as part of $2.7 billion expended for Ebola, which had four documented cases in the U.S. in 2014, with one death resulting. Without in any way detracting from the serious potential risk of these diseases, we must ask what factors determine where precious resources are directed in the midst of so much need nationwide from the drug crisis.
When an epidemic of this proportion threatens so many, a rage of a certain kind comes into play. So we hear, “Well, no one cared before the white kids started dying.” Or “These trash deserve to die. They made the choice to use drugs and this is their just punishment.” Fear, it seems, reveals stigma in its most naked form.
Those of us who lived through the HIV/AIDS epidemic of the early ’80s can identify parallels in the trajectory of initial complacence (Whew! Only gays get this!), concern (Oops! a few others are also at risk) and panic (Uh oh! Anyone can get this). There are also similarities in attitudes, especially stigma, assigned to people who contracted the disease and those who were at risk for infection — namely, gay men, sex workers, IV drug users — all “marginal” people in mainstream society at the time. Many of the same cruel epithets we hear now were also heard during the AIDS era, dismissive of the value of a life lived on the edge of societal norms and values.
Further blame was placed on this group when blood transfusions led to more infections. And by the time it was clear that all citizens could contract the virus through something as innocuous as sexual intercourse, attitudes began to shift very rapidly. Efforts to blame were finally replaced by efforts to treat and to find a cure. But let’s remember that it took years to cycle through this sequence of denial, blame, stigma, realization and action.
Similarly, stigma and denigration of drug users — and very often of their parents, who are seen by some as original cause agents — have, among other factors, limited the public’s response to the overdose crisis. Fortunately, the old view of addiction as a character flaw and a conscious, ongoing choice is very slowly changing as we gain a better understanding of addiction as a disease that is beyond the control of the person who has it. Correspondingly, viewing death as a deserving punishment for a person who started down this road in the first place is beginning to become an outdated notion, just as it did with those infected with HIV in the ’80s.
My daughter, Laura, was among the 52,404 unfortunate drug overdose casualties in 2015. To me, at the time, hers was the only death that mattered. I experienced many months of grief so profound and incessant that I rarely left the house or spoke to anyone. There was no comfort to be found anywhere despite the many friends and relatives who reached out to provide it. During this time, I felt my sole mission was to remain with her in every way possible. I felt an overwhelming need to protect and care for her despite the fact that she was no longer here. To be out in the world and not be with her in my heart and mind felt to me like a relinquishment of my instincts and duty as a mother.
Even though I didn’t cause her death, I felt in some deep recess responsible for what had happened to her. Other parents I know who have lost children from accidental overdose or other “preventable” causes, such as suicide, describe a similar effect on their lives. Notable is the need to inquire repeatedly about what we might have done differently to prevent this tragedy. And for most, it’s a question that never entirely goes away, although it dims over time. In the end, we and our families are irrevocably changed by what we’ve experienced.
Eventually, most of us learn we can survive this grief, and slowly we allow our hearts to be broken open even further, because the worst thing that can happen to a parent, the one thing every parent fears, has happened. We begin to understand that grief is not a transient emotion but a state of being that is now a part of us. When we once again are capable of happiness and joy, our bedfellow is always the presence of a quiet and profound sense of sorrow.
In my journey, I remember a true moment of liberation when I realized that I was one among thousands of parents facing this loss and my daughter was one among tens of thousands of young adults who died, and are dying still. Her life, precious as it was and is, must be seen in the greater context of all precious lives lost to this chronic and pernicious disease.
Today and on any given day, while Washington engages in political bickering and intrigue, 142 men and women will die of an overdose, according to the President’s Commission on Combating Drug Addiction and the Opioid Crisis. This is, by any standard, a health emergency that can no longer be ignored. Established in March, the White House bipartisan commission has just submitted its long awaited and overdue preliminary report; the final report will be published in October.
Though many people reading this will find it startling, its real intention is to wake everyone up to the devastation that is happening in this country. President Donald Trump and Health Secretary Tom Price recently and publicly agreed that this was indeed a national health emergency; however, the necessary sequence of actions that would make this an “official” national health emergency — with additional resources allotted for education and treatment programs — has not yet happened.
Given the scope of the AIDS Quilt project, calling for a new one might not be realistic, but it is possible for us to find innovative ways to make the drug crisis more visible and less stigmatizing for all those affected. Please take the time to read the Commission Report on Combating Drug Addiction and the Opioid Crisis, advocate for more action, volunteer locally and encourage the declaration of an official national health emergency. Now.