"It's not our fault"
How deflecting could make us ignore some of the needed solutions
“You vaccinate your child because I told you to.”
When I asked my mom why she didn’t vaccinate me, this was the phrase she remembered my pediatrician saying when she asked him questions about vaccines. Instead of being willing to have a conversation, he just shut her questions down.
We left the practice that day, and I don’t remember returning to a medical office until I was almost a teenager and I wasn’t vaccinated until my twenties.
“Just take more Tylenol and deal with it. You’ll adjust.”
That’s what my former OB told me after I went to see him for pain I experienced at different parts of my menstrual cycle. At times the pain was so bad it stopped me from running and made it hard to care for my son. I told him I thought I had an ovarian cyst. He dismissed me, saying I just wasn’t used to my postpartum body and needed to “adjust.” He refused my request for an ultrasound. Months later I got pregnant with Addie and had a new care team. My first ultrasound revealed a large dermoid cyst that later had to be removed. He hadn’t believed me, but I had been right.
I’ve shared parts of these stories before, but today I want to highlight a different aspect related to these stories. Stick with me please, I know what I am about to write may elicit some strong feelings.
“It’s not our fault”
When I talk with some scientists, clinicians, public health workers, or science communicators about distrust in science and medicine, and the dismantling we are seeing right now I often hear “well, it’s not our fault.”
And look, I get it. It likely isn’t your personal fault. But this statement misses the mark and tries to deflect a complex problem.
What usually follows this statement is a line about the organized, well-funded people who spread fear and false information. And yes, that’s real. There are powerful actors deliberately sowing distrust.
I’ve talked before about how multiple things can be true at one time. This is another perfect example of that.
Yes, those forces exist, AND we, as part of the broader systems of science and medicine, also hold some of the responsibility.
What If…
I often wonder how different things might have been if my mom’s doctor had responded with empathy and compassion. Maybe nothing would have changed, or maybe, if someone had truly listened and supported her, she wouldn’t have learned to distrust science in the first place. How different would my life have been?
That thought was on my mind a lot during last week’s Advisory Committee on Immunization Practices meeting. (You can read summaries here, here and here and download a debunk brief I helped create with The Evidence Collective.)
The meeting was a reflection of our current times: those in leadership within our government are now the ones spreading lies. But, it’s also impossible for me to ignore that those lies are packaged in ways that feel personal, empowering, understandable and relatable to many of the public.
And this makes me wonder:
Would false information spread as easily if we did a better job making science human and accessible?
Would people be more resistant to false promises and quick fixes if they’d felt seen, heard, and respected by science and medicine? By those they turn to for help?
We can’t know for sure because we don’t yet have a time machine, but we can admit that our systems have failed people, and that those failures at least help open the door to distrust and false information.
Facing our role
I could fill a book with examples of how systems have failed me and my family. I’m not unique and that’s exactly my point.
If we say it’s not our fault (or not even partially our fault) then that means we may not seek ways of fixing these broken systems and coming up with real and better solutions.
Blaming only those spreading and profiting off false information shifts responsibility elsewhere. Yes, those actors carry major blame, and so do the systems that have failed the people they were meant to support. In some cases, these same systems maybe have supported people, but so invisibly that the public don’t even know they exist or benefit from them.
Need some examples?
Our US healthcare system fails both clinicians and patients. Especially minority ones.
Our academic systems don’t typically reward or encourage public engagement.
Our training system don’t typically include how to effectively communicate to the public (and many times not even to each other).
Other barriers discussed here
In short? We haven’t historically valued the kind of relationship-building work that helps people see how science benefits them.
What We Can Do
Moving forward, we need to:
Recognize that multiple things can be true at once and that the institutions of science and medicine do own some of the blame for where we are right now.
Advocate for systems and policies that truly serve all people.
Advocate for including public engagement as a core component of training and the work of science and academia.
Listen when people share their concerns.
Talk and build relationship with the communities we are trying to reach, and then build solutions with them.
Help those around us see the invisible benefits brought to them by science and public health.
and yes…finding ways to recognize and address false information and those spreading it…
A lot of this is the work I now live and breathe. It is a thread that connects through my helping communities in Maine experience science firsthand, through my efforts to train the next generation of scientists to be better communicators, through my work online to reach people where they are and connecting science to everyday life.
It’s also why I’m honored to be one of the 32 inaugural members of the National Academy of Medicine’s Building Trust in Health Science Through Community Partnership and Lived Experience Action Collaborative.
This collaborative is bringing people together to co-develop strategies for rebuilding trust with a focus on community partnership and lived experience.
I know what it feels like to be dismissed by the very systems meant to help.
And I know that trust and a new way forward isn’t built through lectures, press releases, ten minute medical visits or by dismantling our current science and public health systems. It’s rebuilt through listening, storytelling, relationship building, collaboration and a whole lot of hard conversations.
That’s the work that lies ahead. And I’m grateful to be part of it.
Xoxo,
Liz
In case you missed it
My TedX talk on why science needs storytelling is now officially loaded on the TedX site and can be watched here.
The piece I wrote about some of the progress of science for Sharon McMahon substack The Preamble can be read here.
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Photo by Greg Rakozy on Unsplash
Good stuff again. I had a favorite phrase while teaching young physicians: “ it may not be your fault, but it’s your problem.”