Interview with Jess Tilley, co-founder of Harm Reduction Works

Drug users support each other - no judgement!

I had the pleasure of interviewing my long time friend, Jess Tilley, who has done some groundbreaking work in harm reduction. Her work is truly lifesaving, and I encourage you to attend one of their meetings or the one that we do in coordination with them!

Moms for All Paths: Who are you and what do you do? 

Jess Tilley: 

I’m the Director and Co-founder of an outreach organization that is just for people who inject and/or smoke, and for sex workers.  My day job is the program manager of a no-barrier, totally harm reduction based drop in center.  

I want to restore someone’s dignity, not for my own ego but to give back what I’ve been given. 

Moms for All Paths: In my last post, I talked about how my daughter continued to inject even after she was no longer injecting drugs - she just needed the ritual of injecting.  Can you tell us something about what you’ve observed regarding the ritual of injecting? 

Jess Tilley: 

The ritual of injection has changed as our drug supply has changed.  This is what I’ve found as somebody who is a harm reduction professional and as a person who still injects drugs.  When fentanyl hit, it became obvious that we were stuck with various fentanyl analogues.  Those analogues were very quickly acting, and people’s veins were getting absolutely destroyed because they had to inject so frequently.   Suddenly the ritual was lost because people could not inject anymore.  

I started to explore rituals people had with foil.  What people were really craving is the ritual of injection.  I would hear this over and over again when working with women who trade sex for drugs. I had a friend who was injecting water, and they used to boil their water before they injected, not to make the water cleaner but because it was how he was taught to inject when he was using IV drugs.  

I’ve had people tell me that I shouldn’t say this publicly, but I grew up with self-harm.  I don’t like the term self-harm - I believe in ritualistic cutting, and for me it was a form of body modification.  It was a way of feeling that I had control over my own body.   The feeling of something slipping into my skin was comforting.  During a period of abstinence from drug use,  I missed the ritual.  

People will inject or hold onto their last syringe because it’s intimate; it's like an act of sex.  It’s intimate to the point of masturbation.  It’s an intimate experience  that one has with oneself or even with a partner.  There can be control and even abuse, but I’ve also experienced it with a partner where it is absolute trust.  I once had a partner whom I used with, and I used to inject her.  When we stopped using, she told me she missed the act of me cradling her arm, looking for a vein and injecting.  It eased the craving, it fits a need.  I would not expect the majority of people to understand how powerful this can be. 

I know people who have smoked crack who still smoke a pipe.  I know people who have been abstinent from crack and will still be the person who demonstrates how to pack a pipe correctly.  The ritual remains important even without the substance. 

Cutting can feel the same way.  Cutting, like the syringe, makes the internal pain go away instantly.  I recently went to a conference where women from England were presenting about harm minimization for those who cut.  Someone else in the audience said, and I realized I identified with this though  had never thought of it before, that when I stopped using and got into periods of enforced sobriety. I returned to chaotic self-harm.  Cutting for me was a release.  I was an overachiever, I came from a very chaotic family with sexual abuse and trauma, and cutting allowed me to escape that.  When I did start using it was almost an extension of my self harm.  The cathartic feeling of something entering my skin was followed by the drug that offered extended relief. 

Moms for All Paths: You are the founder of a drug users’ union.  It’s a new concept for many people.  We would love to hear more about that. 

Jess Tilley: 

I got into drug user unions because of my early experience coming from a union family.  My grandfather was a union electrician, other family members were in roofers’ unions.  I was just with one of my old mentors, Shelia O’Shea, who was there in the room in 1998 when I first heard about drug user unions.  She said, “You have to bring it back to Massachusetts!”   A union means that collectively our voices are stronger than we are alone when we are fighting against people who oppress us. 

We just created the oral history project of harm reduction in Massachusetts.  For years there were only four drug users’ unions, and now they are popping up all over the place.  I am a very privileged white drug user.   A few of the chapters are mostly BIPOC (black, indigenous and people of color) and they can not call themselves drug user unions.   Most college students can not say they are in drug user union.  

I came up through ACT UP.  I have always believed in civil disobedience and disruption as a way to effect change.  We are fighting for the dignity and human rights that everyone who uses drugs should have.  We believe in the radical notion that people who use drugs are human, and that together, we have the power to stand up for ourselves and each other.  

Moms for All Paths: You are the co-founder of Harm Reduction Works.  Can you tell us more about HRW?

Jess Tiley: 

Albie Park who is the co-founder came up with the idea to create an alternative to AA that provided the fellowship of AA but without the abstinence only focus.  We wrote a script that we do not deviate from and that is used at all meetings.  In the script we make it clear that all are welcome, whether they are using or drinking, no matter what their goals are.  You can go to a meeting if you are high.  You don’t have to want to stop using or drinking.  We respect and support all pathways, including abstinence.  We don’t insist that you do any one thing. 

Our release party was at the Drug Policy Alliance convention in 2019.  Meghan Hetfield was the first one to roll it out.  We were doing meetings in person but when COVID hit we went on Zoom.  After the pandemic was less of a threat, people were insistent that we remain online.  Now we have meetings all over the world, in Spanish and in French, and specialized groups such as the one for Moms for All Paths.  

At our meetings, you don’t have to identify yourself as an addict or alcoholic.  There are no steps.  Another difference from AA is that we allow “crosstalk.”  People who share are asked if they are open to feedback, and if they are, others will give feedback in a respectful, caring way.  We make it clear in the script that feedback is not criticism or telling someone what to do.  If someone is not open to feedback they can say no, and they can refuse the feedback at any time.  

For a lot of people, our meetings are self-care.  We have many people who work in recovery, including therapists, nurses and other professionals.  People come who are just learning about harm reduction.  Some people come in addition to attending 12 Step meetings, and they are welcome too.  

We find that a lot of people leave 12 Step programs because they don’t feel comfortable with various aspects of those, whether it’s the focus on abstinence or the insistence on a Higher Power or something else.  They miss the fellowship, and they want a place to connect with others who have had similar experiences and struggles.  We provide that place. 

Moms for All Paths: Thank you Jess for speaking with us, and for all the lifesaving work you do!

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