July 14-18, 2025 - surveillance, sickness, and choices

Hello friends!

I’m home again and finally healthy. Your messages of support in these two weeks buoyed my spirits. I was surprised and touched to receive them. Thank you, truly. I hope you feel the same warmth and support when you need it.

I’ve been looking forward to this particular edition of Meeting the Moment for months now. I began this newsletter in January with a meditation on running marathons. I rarely encounter my own writing in a way where it feels so right. There are things that have come to pass in the interim that I had only half-imagined, and we are all under terrible strain. I can also see opportunities to improve my thinking and metaphor, especially in thinking more clearly about ableism. But re-reading that piece invigorates me: “I am where I am. I must run my own race. And I have to adapt. It’s not going to be pretty. Our start times are staggered, this is all just the first wave. We can do this, let’s go.”

A marathon is 26.1 miles. This was week 26. We’re nowhere near done, but let’s honor the milestone and dig in.

What’s happening now

• I’m going to start with two short and ugly news items. Earlier this week, the NIH announced the “disinvitation” of expert reviewers who were about to join advisory councils, in favor of politically-preferred alternates. And in the late Friday afternoon news dump, we’ve learned that the EPA has officially announced that it is shutting down its scientific research office, which would end the employment of something like 1000 scientists there. This has been something we’ve worried about since March and I am afraid of what it will mean for our ability to understand and avoid toxic exposures. When I think about systemic patterns of environmental injustice and racism (like oh say, the way Musk’s xAI’s data center is polluting the air of Black communities in Memphis), I find it hard to have any faith in the proposed replacement “Office of Applied Science and Environmental Solutions.”
• The GOP’s sprawling megabill was signed by the president on July 4th and has tripled the budget for ICE, making it the largest federal law enforcement agency. It makes my skin crawl that we are unleashing unidentified, masked agents in unmarked cars to menace people at work, families at church, and children at school. The raids, detentions, and malicious deportations are affecting our communities, our colleagues, our trainees, our students: all of us, directly or indirectly. For those of us with a specific focus on science and technology, there are additional layers of concern and culpability. Yesterday, 404 Media revealed that the facial recognition app used by ICE agents  draws from a database of 200 million images and allows instantaneous access to a mind-boggling array of personal data. Earlier this week, WIRED published new reporting about more than 130,000 immigrant children and teenagers whose DNA has been entered into the FBI’s database used to track suspects in violent crimes. I think about all the research and coding it takes to build these kinds of biometric tools and the databases that they draw on. There are excellent reading lists on ethics in data science, but I hope that as science advocates we all seriously confront how incredible technical achievements can also be horrifying tools of surveillance and oppression. For a variety of reasons, I’ve been thinking a lot about data security recently, and for as grim as that is, I am excited to share our new work-in-progress page for it over at Unbreaking. Come help us build pages on the topics that are most important to you.
• Finally, it feels to me that the other major arena to focus on right now is funding and budgets. If you’ve found the news on this hard to follow, you’re far from alone. My best summary of what we are now is that although the overall picture is rather complicated, outcomes for the things we care about only range between “not good” to “extremely bad.” There are three different things shaping headlines and worries right now:
  • The megabill signed July 4 is now Public Law 119-21 (see my note in footnote 1). It does create policies with serious implications for science and other massive budget items as discussed above, and it was passed via the special budget reconciliation process, but it is separate from the official fiscal year 2026 budget process.
  • Despite the fact that we do not actually have a full federal budget proposal from the White House, the 2026 budget negotiations to fund federal agencies are now underway and we are seeing signs of some slightly-less-bad news for some areas of science. Congressional appropriation committees seem inclined to cut NASA and NOAA budgets by substantially less than requested. The government is currently funded through September 30, but Senators and Representatives will be going into summer recess for August, it looks like fighting for resources will extend into the fall through stopgap measures and more party-line spending cuts.
  • Finally, you might have seen headlines about the defunding of public media like PBS and NPR. This happened through a previously rare rescission process, where Congress voted to cancel more than $9 billion dollars in previously-approved funding. The final House vote just went through a few hours ago. It means that the Corporation for Public Broadcasting will be stripped of $1.1 billion dollars it was supposed to have received in the next two years. Local stations immediately launched emergency fundraising campaigns, some of which are already successful. I’m glad for that, as well as the small mercy that the HIV/AIDS program PEPFAR was unexpectedly spared. I just can’t stop thinking about how small those millions are compared to the billions of dollars of emergency and humanitarian response we’ve just lost in cuts to foreign aid that were also part of this package.

What’s next & what to do

While I was out sick, a wonderful friend sent me a 2019 Maria Popova essay titled Virginia Woolf on Being Ill as a Portal to Self-Understanding. It’s a lovely and unexpected piece that immediately made me think of Arundhati Roy’s searing The Pandemic is a Portal. Reading them together braced me and expanded my thinking.

Popova wins me over with this passage,

“In health, Woolf argues, we maintain the illusion, both psychological and outwardly performative, of being cradled in the arms of civilization and society. Illness jolts us out of it, orphans us from belonging. But it also does something else, something beautiful and transcendent: In piercing the trance of busyness and obligation, it awakens us to the world about us, whose smallest details, neglected by our regular societal conscience, suddenly throb with aliveness and magnetic curiosity. It renders us “able, perhaps for the first time for years, to look round, to look up — to look, for example, at the sky”

I found myself thinking not only of my own sick body as I read those lines, but of our failing nation. In my storytelling years, I was inspired by Rita Charon work on narrative medicine. I remember being so struck by how important it is for people to process and incorporate the reality of diagnoses. Serious illness changes everything, sometimes forever. It forces us to confront our own stories about ourselves. Who are we when our capacities and worlds suddenly change? There is a book I very much want to read, Disabled Ecologies, that explores disablement and alternative modes of connection, solidarity, and resistance.

In her essay, Roy writes,

“Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next. We can choose to walk through it, dragging the carcasses of our prejudice and hatred, our avarice, our data banks and dead ideas, our dead rivers and smoky skies behind us. Or we can walk through lightly, with little luggage, ready to imagine another world. And ready to fight for it.”

Together, they make me think about how we will pick our fights. Do not despair – there are endless ways to find how and where you can find the right one for you. Maybe your realm is more procedural, and you can take inspiration from how District Judge Susan Illston is adjudicating her case in the wake of unsettling Supreme Court decisions. Maybe you will throw yourself into local efforts, whether that’s your community’s foodbank or Summer Fight For Science event.

Make your choice. Choose how you will walk through this. You are choosing right now and each day. Make it count.

Liz