The other day I got an email pointing out how inaccessible The Caregiver Space is:
“So, you no longer have forums, but what about people who aren't on Facebook? Don't we count?
THis site is a mess. No thanks, I don't want to read walls of text or join Fcebook to ask for help. I have enough on my plate right now, like how to feed my husband when I'm too tired to get out of bed because I haven't had a break in 6 years for even one day. But sure, go ahead and make your site completely inaccessible.”
It’s true that moving our groups from a private social network to Facebook meant they are no longer accessible for people who don’t want to use Facebook. There are a lot of legitimate reasons to not want to be on Facebook.
I think this person is overestimating how accessible our old site was. My attempts to keep our private social network free of bots and spam created a cumbersome sign up process that made it too confusing for a lot of people. Once people had an account, they had to get to know a new website interface.
I kept dealing with DOS attacks that led to our host threatening to kick us off their servers. That’s what led us to switch to Facebook in a move that we thought was temporary.
We are hardly the only organization that’s struggling to navigate a world that seems like it’s controlled by tech monopolies. We’ve tried several times to switch from Facebook back to a network of our own and to other, slightly more ethical, platforms. It hasn’t worked.
Switching from our own social network to using a third-party social network hasn’t made our groups less accessible. If anything, they’re probably more accessible, since Facebook has better built in accessibility features than anything cobbled together out of WordPress, Buddy Press, and BBpress.
Still, our move to Facebook has shifted who feels comfortable participating in our groups.
Back in 2014 when I first joined The Caregiver Space, when I told people what I did they’d point out that not everyone has access to the internet. They’d use the same “gotcha” tone, as if I was unaware of this.
I’d try to patiently explain that almost every religious organization, community center, and hospital system offers in-person caregiver support groups. There are also telephone support groups for caregivers.
In-person and phone groups are scheduled, so they’re only available at certain times, which makes them inaccessible to some types of caregivers. Our groups are asynchronous, making them available 24/7. This makes them accessible in a different way.
We aren’t the only caregiving group out there, nor were we back when Adrienne first founded the organization. Our organization was founded by a caregiver who wanted an online group because it was basically impossible for her to attend the groups that were available to her, so our groups are online.
For a while I naively described our programs as being open to anyone around the world who spoke English. Back when we still had a private social network and I thus had access to analytics about our members, I was surprised to discover how many came from outside of the US, Canada, and the UK.
English is widely spoken around the globe and our membership reflected that. I was excited about the opportunity to see how the lived experience of caregivers differed — or didn’t — based on government policies and programs.
I didn’t realize I was inviting people to retort “But what about caregivers who don’t speak English?!”
It’s true. I couldn’t run a support group in any language other than English, even with the minimal moderation of a peer support group. We don’t offer any support for people who don’t speak English.
Our website is text heavy. For a long time I focused on running an online magazine while Jonah cultivated our online communities. I’m a wall of text sort of person. If you follow us on Instagram you know that. If you read this you know that. I read a lot. I write a lot.
When I worked as a graphic designer I was happy to roll up my sleeves and help my small business clients with whatever came up, as long as it didn’t involve audio or video. I learned to run printing presses and bindery equipment. I fact checked and managed rights for books I’d originally been hired to typeset. I ran PR campaigns. I planned events. I shifted into social media strategy and communications planning. I reluctantly started building websites. Still, I said no to every audio and video project.
When my friends send me a link to a YouTube video I either ignore it or find an article on the topic to read instead. There are a handful of podcasts I enjoy, but I find most of them unpleasant.
Adrienne loves making videos and podcasts. They’re much more resource intensive to create than writing articles. It’s not something she, or anyone else, can easily create on her own. Thus, we’ve made few videos and she co-hosts a podcast with Dave Nassaney.
I’m honestly a little confused that no one has given us a hard time for how inaccessible our site is, in terms of following standards for general website accessibility. While I’ve tried to follow accessibility standards when creating our website, it’s a horror show. It does not meet the standards at all.
This is made worse by the number of times we’ve redesigned the site, awkwardly porting content into new templates and breaking things in the process. We’ve changed the way the site is organized multiple times. It’s reasonable for anyone to have issues on our site, given the dead links, broken shortcodes, missing images, outdated information, and sheer amount of content.
These are the things that fill me with dread whenever I think about them, yet I do very little to actually fix them. There is no quick fix that would allow me to cross it off my to do list after a day or two of work. I can’t imagine what being done would even entail.
I could come up with compelling explanations for why I haven’t fixed the accessibility issues I know about on the website and haven’t identified the issues I don’t even notice. Ultimately, though, it comes down to the fact that it seems tedious, confusing, and incredibly time consuming. There are other projects that feel more personally meaningful and less unpleasant. Thus, I make the easy fixes and the more complicated changes wait for another day.
We could hire someone to conduct an accessibility audit. We could hire people to sort out the issues with the website. Plenty of websites provide audio of all of their articles and have videos with transcripts. There are services to provide these. We’ve never gotten a grant, but we could start applying for them to do this work. Maybe we could get volunteers to do some of these things.
The thought of adjusting our organization into something that would get grants and then having my role shift into managing all of this sounds like a drag. I used to get annoyed with our lack of resources and wanted things to seem more professional. I wanted to identify and follow best practices.
Now I appreciate how DIY it all is. I like not being a “real” organization. I like not having to answer to major donors or foundations. I prefer having to answer to the community.
I like how our organization feels like a handful of friends coming together to work on a project, without defined tasks and roles. We do what we do. We don’t do what we don’t do. As the only one who isn’t volunteering, I’m the only one who has to answer to anyone. Still, the things I have to do to fulfill my responsibilities aren’t clearly defined. I don’t always know what counts as work or not.
Just like I have ignored certain wonky things in my apartment for years and other things get an immediate fix, I prioritize things for The Caregiver Space based on some hazy mix of what seems most important for our community and what seems fun to figure out. Then I wake up one day and decide I can no longer tolerate that weird sound the toilet makes, even though I’ve been ignoring it for months because I really do not want to deal with it, but today’s the day.
The OkCupid blog once gave the advice that a successful online dating profile highlights the things about you that set you apart, that might be considered flaws. It doesn’t do you any good to hide your giant ears or not mention that you have two kids, since you want someone who’s going to love you with those things. You want someone to be excited about all of you, including the things that might be potential deal breakers.
I’ve tried to follow that advice and make it clear who we are on our homepage. We have some potential deal breakers.
This is not a government initiative. This is not a corporate project. I try not to be the man behind the curtain. I’m not a wizard. This is a community group, we just happen to be online.
As much as I don’t want to exclude people, I’m okay with the idea that not everyone is going to feel at home here. People want different things. Sometimes the things that make a place feel like home to one person make it uncomfortable for another.
People say I have a strong personality. Friends joke that I’m an acquired taste. It can seem like no one has a neutral opinion on me. A lifetime of that makes it easier for me to acknowledge that not everyone is going to want to get involved with this organization. It’s a fact of life I can accept. I’d rather people have strong feelings. The people who are a part of this little project are passionate about it. If people had meh feelings about The Caregiver Space I don’t think the organization would still exist.
We’re open to all caregivers. We are not for all caregivers. We’re online. We’re on Facebook. We speak English. Our accessibility is spotty. We’re people who make arbitrary moderation calls and accidentally break things on the website and don’t want to prioritize tedious tasks. We do our best and we’re not for everyone.
The biggest limit isn’t our reliance on Facebook, the fact that we’re online, or the fact that our groups are only in English. The biggest limit, the one so many people overlook, is that we provide peer support.
Adrienne and I might hold more responsibility to the community than the other folks who show up on a given day. That doesn’t mean we have any more expertise than they do. Adrienne and I have each created the support we needed. All of our groups are the result of a community member creating what they needed in that moment, which is part of why our programs shift around so often.
When you’re totally burnt out because you haven’t had a break for even a single day in six years, peer support is not enough.
So many people finally think of joining a support group when they have given everything they could and then more until they’ve been hollowed out. So many professionals, without thinking about how inappropriate it is, refer people to peer support groups when they’ve past their breaking point and in a serious crisis.
How can people support each other when all of them are overwhelmed by compassion fatigue? How can people listen to each other when they’re too exhausted to pay attention? How can someone wade through conversation threads when they don’t have five minutes to themselves? They can’t.
That’s why there are therapists. That’s why there are support groups run by licensed professionals. That’s why there are “real” organizations that actually are accessible. That’s why there’s respite care.
We’re a community garden, not an international grocery store chain. If someone is worked up because we don’t have what they’re looking for, it’s because they’re burnt out and tired of not being able to find the support they deserve. Still, I don’t feel like I owe anyone kiwis when we only grow salad greens.
It seems callous to put it this way, but I am not worried about the people who don’t feel at home at The Caregiver Space.
I’m not on a mission to save anyone but myself. I owe other people what we all owe each other. I was not put on this earth to make sure I magically solve caregiver burden for everyone during my lifetime. My business cards do not make me uniquely responsible for other people.
Can you imagine how laughably awful whatever I’d produce would be if I tried to make a version of The Caregiver Space for people who speak Russian or don’t use the internet? I’m not here to try to swoop in and solve problems I don’t understand for people I know nothing about.
There is no one solution that will work for everyone. There’s no one solution that’s enough on its own. When governments try to create systems that work for everyone, they end up not working for anyone.
The Caregiver Space is not meant to be a solution for everyone. It’s certainly not going to “solve” any caregiving issues on its own. It’s one of those many small things that makes our lives better. That’s all I can hope for.
Adrienne always aims higher than I do. She has grand hopes and I come up with the minimum viable program that sort of gets at the same idea. We balance each other.
Adrienne wants to make The Caregiver Space a space for everyone who provides care, catering not just to different needs for access, but also to general preferences. She wants podcasts, radio, TV, a hotline. Her ideas would be incredible resources. They’re just not something we can actually implement right now.
If a handful of the millions of caregivers in the world can create The Caregiver Space and keep it running for a decade, what else can we do if we each try?
As someone who experienced an odd sense of relief when part of my apartment flooded and everything stored outside of my bedroom was ruined, I can relate to Rusty Blazenhoff’s thoughts on clearing out belongings we struggle to let go of:
Honestly, overall, the Great Purge of 2022 has been pretty great. As draining as exorcising the past through rehoming objects has been, it's also been freeing. I'm not in charge of all those things anymore. I don't ever have to interact with those objects again and feel whatever emotional charge they were throwing back. I think the most eye opening part of it all the amount of hope I had placed on objects. Like I would be able to touch the past again somehow. The past is the past and I need as much space—physical and mental—as possible to move forward. I have some big ideas and I look forward to finding out if it's possible for me to do them!
Ragen Chastain wrote a quick explainer for doctors to remind other doctors that weight loss is not a cure all. It might be helpful coming from care workers, too.
Conversations around prenatal testing typically focus on the ethics of using the information to terminate pregnancies to prevent the birth of a child with disabilities. New information suggests a new angle to the ethical quandaries: the discovery that these screening tests aren’t accurate.
And in closing, my friend’s kiddo went viral this week because it’s not just caregivers who are exhausted: