By Tessie Castillo
“I never thought I would end up here, but here I am. I choose to create beauty in the space left in this world that my daughter used to occupy” – Lettie Micheletto, mother of Megan McPhail, 1987-2014.
Lettie Micheletto never thought she’d find herself on the steps of the General Assembly advocating for better treatment of people who use drugs. Neither did Shantae Owens, Tanya Smith, or Kathy Williams, all parents united by the loss of a child to drug poisoning. Stunned and grieving, these parents nevertheless possess a raw passion that makes them a force to be reckoned with. Like so many others across the country, they are mobilizing to demand change to how society treats people who use drugs and to memorialize the children they have lost.
Undeniably, there is power behind directly impacted parents. In my years as a lobbyist for drug policy reform, I’ve seen the hardest, most tough-on-drugs legislators dissolve under the gentle tears of a mother pleading for reform. There is a connection between legislators and parents that no lobbyist or well-executed advocacy campaign could dream of forging alone. But at the same time, there are challenges to working with new, often unpredictable allies. So I thought I’d lay out, from my own experience, the top benefits and challenges of involving parents in harm reduction advocacy.
Benefit #1: Effectiveness
Parents who have lost a child to the drug war are a potent force for change. They have drive, motivation, and a unique ability to elicit sympathy. Nothing changes hearts and minds quite like a compelling, emotional story of personal loss. In some states, efforts to change drug policy have been led almost entirely by parent groups. In Georgia, parents rallied to pass one of the country’s most progressive 911 Good Samaritan laws. In Florida, a coalition of moms has been the driving force behind expansion of naloxone access. In Iowa and Illinois, parents are leading efforts to legalize syringe exchange programs. Everywhere, parents are standing up to declare that their children are more than just statistics.
“If no one speaks up for our children and sheds the truth on the fact that they were bright, wonderful kids who had an illness that they simply couldn’t battle, nothing will change,” says Tanya Smith, who helped advocate for a Georgia’s 911 Medical Amnesty Law in 2014 after her daughter, Taylor, died of a reaction to methamphetamine the year prior.
Parents can unravel the false narrative of drug users as inherently deviant or immoral and paint a true, complex portrait of people who use drugs and people who love them. They can show the devastation of loss on families and communities. Most importantly, they can help battle the number one obstacle to meaningful reform – stigma.
Benefit #2: New Allies
This sponsor paid to have this advertisement placed in this section.Most movements start with a small group of people with similar ideas who are passionate about reform. But in order to evoke lasting change on a macro level, movements need to expand – and that means welcoming new allies into the fold. This isn’t always easy. New allies don’t have the institutional history and knowledge of the movement. Sometimes they have more social or political power than the original group of activists, which is good for expanding influence, but can threaten to hijack the founders’ original intent. The harm reduction movement has seen a lot of this dynamic as it has grown in recent years, accruing allies such as faith leaders, recovery communities, first responders, public health professionals and impacted parents. There have been some growing pains and continued debate over the allies’ role, but the expansion has led to wider conversations about harm reduction and more advocacy wins. Parent advocates have played a large role in bringing conversations about harm reduction into homes and communities that were previously silent on drugs.
Benefit #3 Finding an Outlet for Grief
For many parents who have lost a child, simply getting through each day can be an enormous challenge. But pain can also be a powerful agent of change. Lettie Micheletto lost her 27-year-old daughter, Megan, to heroin poisoning in 2014. Since then, she has been part of bringing awareness about drug laws to other parents.
“About six months after Megan’s death I crawled out from under my rock and began to work with a local coalition in my hometown to help educate and bring awareness of the opioid epidemic,” says Micheletto. “I am obsessed with spreading the message and talking to everyone I can, everywhere I go. I have many friends who have lost children, other family members or friends to overdose. It is a nightmare that many people live and many others ignore.”
Thanks to Micheletto’s efforts, a North Carolina lawmaker recently included $100,000 in the state budget to raise awareness about the state’s 911 Good Samaritan law. For many parents, advocacy creates a much-needed opportunity to channel grief into purpose.
Challenge #1 Working with Newbies
Though there are many advantages to working with parent advocates, these efforts are not without challenge. Of course many parents are or have been involved with drug use themselves, but it seems the majority of parent advocates today had little knowledge of drugs, drug policy or harm reduction until it impacted their children. In many cases, they didn’t even know their child was experimenting with drugs until after his or her death. Then suddenly they are thrust into a world of grief and new concepts that seems foreign and daunting. They want to act, but they lack institutional knowledge of harm reduction, drug policy and the criminal justice system. This can create some very uncomfortable situations.
Some of my most memorable face-palm moments have come from bringing well-meaning, but very green parents to advocate at the legislature. I’ve spent many an afternoon with parents trying to explain the problems with involuntary commitment laws or to untangle the save-the-user but kill-the-dealer narrative. I’ve had to correct parents whose first line to any policymaker is “my kid was from a good family, not just some homeless person.” Sometimes step one is just to teach the parents to stop using stigmatizing language like “addict” to describe their own child.
It takes patience to educate a parent who has been steeped in stigmatizing attitudes towards people who use drugs until the problem hit home and to help change the way they think about drugs and drug policy. There are so many wonderful parent advocates today who understand harm reduction and how all of us – users, sellers and people who have never touched illicit drugs – are caught up in the net that has killed so many people. They didn’t all start out with that knowledge, but by meeting them where they are at, we can get them there.
Challenge #2 White Power
It is frequently pointed out that the rhetoric around drug policy has softened since opioids started killing children from white, affluent communities. Certainly the majority of parent advocates who appear in the news are white and middle-class. And while there is nothing wrong with parents of any race or class becoming vocal advocates for reform, the stark homogeneity of media coverage doesn’t reflect the rapidly changing demographics of drug-related deaths, especially around opioids. According to the Centers for Disease Control, from 2015 to 2016 the age-adjusted rate of drug overdose deaths involving any opioid rose by 25.9% among whites in the United States, but 32.6% among Hispanics, 36.4% among Asian/Pacific Islanders, and a whopping 56.1% among black Americans.
Diversity is an important, and often missing component to parent advocacy. Correcting this can mean making the extra effort to pro-actively reach out to under-represented groups and create space for their voices. Out in rural Brunswick County, North Carolina, Kathy Williams and Alex Murillo are teaming up to do just that. Kathy Williams lost her 32-year-old daughter, Kirby, to an overdose in 2016. The following year she helped found B.A.C.K. O.F.F., an organization of feisty families who are fed up with losing their kids and have started to organize for change. Kathy and Alex are working to welcome Hispanic families into the group.
“We had two recent deaths in the Hispanic community due to drugs,” says Murillo, who lost his 19-year-old nephew last year to an overdose. “I want to help get the Hispanic community involved in education around drugs, but it’s hard because parents won’t admit there is a problem. Here, if a child dies of an overdose, the parent will say they died in their sleep.”
Overcoming cultural and even language differences to organize a diverse group of parent advocates can be difficult. Many of us, myself included, don’t do this as often as we should. But that extra effort can go a long way to showing policy-makers the true breadth and complexity of drug use.
Shantae Owens, a parent advocate from New York, lost his 19-year-old son to heroin poisoning in 2017. “Whether it’s a white kid from Richmond or a black kid from New York, we need to put aside our differences and come together to solve a common problem,” says Owens. “The longer we keep looking at the one thing that separates us, the more people will die.”
Shantae, Alex, Kathy, Lettie, and Tanya are among thousands of family members across the country united by tragedy, but also by strength. They may not have wanted or imagined ending up in this place, but they are here, creating beauty in the space where their loved ones used to be.