What would a better life look like?

And that time I broke our mailing list

If things look different, it's because I switched our Caregiver Space newsletter to Substack.

I accidentally archived our whole mailing list in Mailchimp on Friday night. Oops.

I'm a huge fan of Mailchimp, but over the years they've gone from providing the basics to providing all the bells and whistles as they've shifted their focus to corporate marketing. I'd been thinking about switching our newsletter to a provider that's a better fit for a tiny nonprofit like ours, so this seemed like a good excuse to finally move this task to the top of my list.

I did my best to go through the list and import only people who are currently subscribed and opening the newsletter regularly, but I'm not totally confident that I got it right! So if you're getting this in error, you can unsubscribe and I won't bug you again and I'm so sorry! The unsubscribe link is at the bottom of the email.

If your life has changed and you're no longer interested in getting the weekly newsletter, please go ahead and unsubscribe. Thank you for the time you spent with us.


If you follow The Caregiver Space on Instagram, you already know I've been reading Amanda Leduc's Disfigured, which looks at depictions of disability in fairy tales through the eyes of a woman with CP who loves Disney.

One of many interesting points she makes is how fairy tales are always about individual triumph, never systematic change. Disabled people who are worthy are magically made abled. Those who aren't worthy meet terrible fates.

In fairy tales winning means gaming the system so you (and maybe your family) end up living happily ever after, not changing things so people who lack a fairy godmother are also taken care of.

The stories we grow up listening to shape what we view as possible, even if we know fairies aren't real. In caregiving, it's hard to imagine what a healthcare system that treats people who need care and people who provide care as worthy and important would even look like. It's hard to imagine, right?

We know that patient centered care ends up being the same old thing with fresh brochures. We know that poverty level wages for care workers isn't enough. We know institutional care leads to neglect and abuse, but we know home care means neglect and poverty. There are incredible examples of mutual aid and care webs, but these require a level of charisma and community organizing few can pull off.

Right now feels like a good opportunity to rebuilt things from the ground up, since our existing health care system is in shambles. It's so hard to imagine what to build when it needs to be so radically different than what we've known.


In other news, our office pup, Schatzie, has been slowly transforming from our neat and trim pup into a tumbleweed.


One of the nice things about Substack is you can comment on the newsletter! I love asking questions, but going through responses and compiling them for the next edition is incredibly time consuming and emotionally exhausting. I’m eager to have a new tool so you can build connections with each other and share your wisdom, instead of me just talking at you.

If you’re familiar with Substack, you know it’s designed to help creators build a stable income to support their work.

While Adrienne and I are concerned about finding funding to keep The Caregiver Space going, we aren’t going to require people become paid members.

Until next week,