Do you read this newsletter every week? Do you value the labor that goes into it? Have you become a paid subscriber? Think about it! Many of the people who read this newsletter the most are people who haven’t gone over to paid — and I get it, I really do, I’m constantly saying I’m going to pay for things and take weeks to actually do it. But maybe today is your day.
Jan 16, 2022·edited Jan 16, 2022Liked by Anne Helen Petersen
As a formerly high-achieving, now low-functioning/low-income disabled person, I've been on the end of "contributing or benefitting" that I never expected to be.
And after sitting in that uncomfortableness for some time, I think it's the wrong framing: contributing or benefitting.
Giver or taker.
The former, worthy, good and generous.
The latter, needy, unfortunate, and groveling.
In my "successful" days, I was benefitting. Benefitting from health and all the pretty thin firm young privilege that comes with it. Benefitting from "earning" jobs and kind gestures. Benefitting from the simple ability to eat convenient food, drive a beater car, walk wherever I wanted, work extra to save for trips and nice skincare and organic food.
In my disabled days, I'm...benefitting? I've been granted this newsletter subscription (thank you, thank you). I've gotten the blue badge that lets me park closer. My health insurance deductible is adjusted down in accordance with my low income. Some outstanding medical bills have been forgiven. My parents pay for my laundry to be taken away and returned folded.
Who gives, who takes? I'm too sick to work much, but I have the time and patience and breadth and empathy to hear my close friends' laments in a way I never did before. For them, I'm a safe space. I hope to help the swelling numbers of long haulers coming up on one of my diseases, ME/CFS.
I've given back my use of the trails, my pounding on the pavement, my pull on the gas stations, my patronage of processed food because disability forced me to. I didn't—couldn't—have a kid, gave that back to the planet in the form of just a few-fewer people needing resources, I guess.
We all give, and we all take, and it's so hard to see how. Disability is the only minority in which you can find yourself a part of in an instant. What would you want for yourself if you were disabled? If that thought chaps—"I would never"—let me remind you, no one chooses to be. And while many parents choose to be parents, many don't.
Most of my help comes from my family and friends, who "generously give" to make my life possible. But I wish they didn't HAVE to, because of the dearth of resources available to me. It's less of a gift to me and to them, and more of a survival tactic and act of loyalty—I become dependent, because what else can I do? What else can they do, as my family and friends? How much of the giving is "generous", and how much is resentful, desperate, or gladly given but hardly had?
This is where I think safety nets really, really matter.
Because people who *receive* gifts don't feel like burdens. People who NEED gifts do.
When a gift fulfills a WANT, it's a delight, a grace, a connection, a pampering.
When a gift fulfills a NEED, it's an emergency stopgap for a failure of society.
For me, this newsletter is a gift.
The break on medical bills is more like social justice.
Gifts should come from community.
Justice should come from society.
I don't love a system where parents' only recourse is the "kindness of community". I want the village raising a child to be a lovely thing, but I know it turns into a popularity contest. It turns into conformity and pleasing to stay in good graces. It turns into people who can't afford to give giving too much, and sneering from the judgy and privileged.
Reliance on community, when it means survival, means prioritizing your place in that community above all else. To be helped can change your dynamic in that community to the help-ee. The pitied. The inspirational one. The better-get-better one. The oh you again? We already helped. You always need help. Now, you're a mooch.
Justice—real justice—doesn't make these judgements. Communities do.
It's a glitch of individualistic mindset to think we'll all find a way within this system to get all of our needs met, no matter our circumstances. But I hope we can scooch our current system closer to meeting more people's needs, more of the time.
I see that happening in legislation, if anywhere. If not there, in company and corporate policies, from employee pressure. Community as a survival tactic is a temporary shelter, and these efforts should be saluted...but I hope they don't have to be permanent.
I just can't see another person dependent on a GoFundMe for medical care.
Because gifts should feel like gifts, not life rings. Giving should come from generosity and abundance, not desperation and despair.
So that when a neighbor does step in, it can truly feel like a gift—instead of, "am I going to drown saving this drowning person?"
I have chronic disabling pain. My fault, really, because in searching for affirmation of my talent I overworked my body until it broke. Not as an athlete but at a computer processing words and data. Perhaps I am living in a space like yours. Mostly I’m forgotten or just have to be left behind, my previous community is able bodied and works and travels. I don’t blame them for that, they have needs too. Of course many people don’t realize the needs of the disabled eg people who don’t shovel their sidewalk because it isn’t a barrier for them and it will melt soon enough. And that ignorance turns into our dependence. I don’t have any answers but I can offer my understanding.
It's not your fault. I broke my body at a computer too, but a lot of bodies don't break that way. Chasing your talent is one of the most noble things you can do. No one chooses to be disabled (absent the transdisabled which probably still is some sort of mental disability...)
It is impossible to see all the barriers disabled people face until you are one...and even as one, I miss the needs of others with different disabilities. Winter is a whole thing.
I found my first disabled communities online, and then slowly learned how to integrate back into a bigger abled society as a disabled person.
The hardest lesson I had to learn (am still learning) is how to ask for help. Someone on our NextDoor here is disabled and asked for shoveling help. Done, fixed. I wonder if your city offers services? Or if any plow companies have an account for pro bono jobs? It's possible...
Agree about the asking for help part...and also hard when people are isolated as many with chronic pain are...to have people you can reach out to. The city is a solid idea or your local community organization/neighborhood group.
I think it's important that entities like the City DO recognize certain ordinances as ableist and establish disability exceptions and workarounds up front...if nothing else, enquiring might help the City think differently.
I recently wrote our city about a wildly popular "walkable" downtown plan and asked what the plan was for helping car-dependent disabled people who had been refused wheelchairs through insurance maintain independence. They wrote back saying they hadn't even thought about it. The systems that fail us overlap, but there are places where they can create solutions—if they're alerted (and of course, motivated.)
It's so hard. I didn't truly understand what my family felt looking at me—appearing hale and hearty—until I went to a retreat for women with severe chronic pain. I was like, why am I in a room of such normal looking OH.
When it's really, really bad, people who know me well say my face "hangs differently." That's it. I feel like the walls should burst into flames if I get too close but, no.
So many good & important points, & much that I relate to personally. I believe that Justice requires we take care of our own - who is We? All of us. Who is Our Own? All of us. "Charity" is sloppy & unjust - society must take care of society - your point about the social safety net. And what happens when you don't have family, no parents or siblings or functional relatives or people who have the time or inclination to become part of your support system? Those people are We, too.
Also you make the point of giving & taking. What is giving, in our society? Too often it means something material, or maybe time. I love that you can see in your present role how much you are giving to those materially & healthfully blessed, who may be impoverished in ways that you are not. What we value...
Thank you. Yes, exactly. I am "fortunate" to have a family who "gets it" and helps, but what if they couldn't or wouldn't? I didn't do anything special to deserve them, I just won the family lottery. I did build my own community intentionally, but I did that as an abled person, and am not sure I could do it again, at least not in full, in my current state. The point is, no one should have to "deserve" any of this.
What is giving, what is granted, what is withheld, what is accessible...the more I learn, the more I see, the complex hands of cards we are all dealt, with good and bad in unfair measures for all.
I think one big problem is not just empathy, it’s that there is so little slack in our systems. I am the auntie (honorary) who picks up kids from school and babysits them such. And I’m happy to jump in. But there also isn’t much space for reciprocation. Like before I was partnered finding someone to take me home from like dental procedure where they require someone to bring you home was hard. Because of course my friends who are parents (most of them) don’t have the leave to do that. I managed to break my elbow this summer and my partner had to go to office when I wasn’t really in a place to be alone yet. It took some juggling to find someone to sit with me. And there is only so much slack that non-parents can pick up at work before it grinds them down. All of this would be easier if we weren’t all stretched to the breaking point. It’s systems.
Parent of a 2.5 year old checking in, and I am internally screaming. I am so tired, my husband is so tired, my mom and in-laws are so tired from trying to help us. Everyone in my family is blaming everyone else in my family instead of being empathetic and realizing that we are all just so tired because society has failed us.
I’m trying so hard to find more energy and strength to get through - tweaking my diet, exercise, medications - but I’m still so tired. My house is a giant mess and I hate it but I have no energy to clean. If I could have people come over and be non-judgemental and just hang out with me while I declutter and clean that would be awesome, but I have no idea how to ask for that kind of support. That’s the kind of empathy I could really use right now instead of having family members blame me for being lazy and calling me needy.
I think you highlight something that is also driving folks with younger kids apart - literally every single situation right is different. Some people have parents close. Some people have easier access to babysitters. Some people can't shift their hours. Some people can do a half-day pre-school. Some people have medical conditions that prevent all of these things. I'm jealous of folks with grandparents close by, but I also realize that's not a magic bullet and will probably lead to some family stress down the line.
Yep. The grandparents have been and are super helpful, but we've butted heads over general parenting stuff as well as pandemic-related stuff and that has been very stressful. My mom is extremely risk adverse while my in-laws are much less risk-adverse, and the pandemic has made that worse. So you're not just butting heads over things like discipline methods but also things like quarantine guidelines.
FWIW...I've been missing the kinds of friends I can do real-life stuff with. Not highlight-reel things like looking pretty for coffee catchups or having people over for tea n crumpets when the house looks/smells good. I want that friend that helps you clean out a closet or talks to you while you sort laundry. Or who asks me to come do that. There's a casual intimacy there that just feels good, better than something more polished.
I had a friend say recently, "Please call me to come do minor home repairs for/with you! I want to learn and I think it's fun." I think she's felt that same urge.
Despite the longing, I haven't quite evolved to the place where I can invite someone into my mess either. But I HAVE gotten to the point I've saying to distance friends, "Hey would you mind if I called you while I did chores? There will be some bkgd noise but let's catch up!" Usually they're like hell yes, if I can do my chores too! Then I disappear into a good long overdue chat and don't even notice that I'm cleaning my house. They don't see the mess, and neither do I, we both get shit done, so it feels win-win.
Just saying there are people out there longing to be this person for you, and there's also that less vulnerable baby stepping stone of calling.
Definitely! What makes me sad is that I remember now, offering to help people this way many times in the past, & no one accepted, it was like, that's not how their lives were organized, or they didn't believe I was sincere. But it sounded like fun to me!
The mess! My kid is five and in kindergarten so in theory I could take a couple days off work (since I have ample vacation time) while he's in school to clean, but in practice, five out of the last six times I have done that something has come up. My mother-in-law's neighbor threatened her life and I was over at her house checking in on her. My kid's teacher got covid and while he wasn't sent home due to a test-and-stay program, instead of doing the things I'd planned, I ran around frantically doing errands in case he tested positive a day or two later and we needed to isolate. My kid just plain got a cold and had to stay home. The schools closed for a day of district-wide covid testing. It's one of those sick jokes at this point, that I can't even take a day off work to declutter the house because something will happen to take over the day.
This is so sad, so basic - just someone to accompany you while you do the work yourself - why does that seem so hard, so impossible? But that's the way we live now. My situation is radically different, yet I also totally relate - & wish I could come over & sit while you tidy!
Thank you! After my initial comment, I actually talked to a couple of friends about it and they're going to come over occasionally as well as hang out with me on FaceTime while I clean!
I’m a parent of a child under 5, and for me and many others the problem is that we’ve exhausted our employers’ patience. There was a lot more understanding in April 2020 when working moms (usually moms) had to stay home with their kids.
I’m glad to see articles like these because I hope that maybe somewhere, someone’s boss will see it and give them a break.
I hate that employers are even allowed to have "patience" around the simple state around being humans...it shouldn't require patience and grace for very human circumstances. And it shouldn't be short term. The fact that anyone is getting anything done in this climate is a frikken miracle.
So I work in government and everybody is justifiably mad that things aren’t better. But government workers are people too and dealing with pandemic crap. While there is work that doesn’t actually have to be done right now, there are lots of things that need to keep going. That’s a real tension.
As a parent of a child under 5, THANK YOU for "getting it", even though you are not a parent yourself. In my community there seems to be a direct split between those who continue to be cautious and take the pandemic seriously (those who have kids under 5 or work directly with kids) and folks who just kinda hand-wave it all off because "everyone can get vaccinated now, right?" Of course, that's a broad generalization, but there feels like there is often little empathy or support from those who don't regularly interact with anyone younger than teenagers.
One thing that I think has compounded the issue, especially for us, is when your community (or hopes of community) is built upon the common ground of having kids. My husband and I moved to an island in Puget Sound near the Seattle metro area (hi, island neighbor!) and left most of our friends back in Seattle. We're naturally homebodies and WFH even pre-COVID, so we figured we'd really get the push to build our local community once we had a kid. Well, I got pregnant in Jan 2020 and this THIS *gestures broadly* happened. We finally made the immensely difficult decision to start our daughter in daycare in March because not only do we feel social interaction is important for her, but WE need social interaction with more families even though it's going to continue to be constrained by COVID for the foreseeable future.
But I wish I could sing your broader point about communities and building empathy from the rooftops. You don't need to be friends with someone from every possible "group" to understand where they are coming from and the struggles they face or the value they bring to your communities, but exposure to people writ large is SO important and something that seems so easy to bypass as our social lives become increasingly digital and siloed (and quarantined... ugh).
I understand - we've made the hard decision to continue to carefully socialize with a few families for the same reason - our 2.5 year old daughter needs and thrives on the interaction. She comes alive in a whole new way when she's around other kids, especially older kids. She watches them, follows what they do, takes more risks, and giggles almost nonstop.
Not that it ultimately matters, but I really think she would have started walking sooner than 17 months old if we didn't keep her away from other kids in the early months of the pandemic.
I work in the office of a small private K-8 for 'gifted' kids, and, as of Friday, we had at least 50 people -- out of about 500 (between students/faculty/staff) out either because they were positive or because they needed to quarantine for 10 days after being a close contact with a positive (we have stricter COVID protocols at school than even the CDC ones at this point). At this point, every time I, and my coworker in the office, test negative (we do weekly PCR testing of _everyone_, all 500-ish folks) I'm mildly shocked tbh. And this is in a school where everyone takes things seriously, where everyone is masked at all times, where lunchtimes for the kids always take place outside, where pretty much every student is fully vaxxed now (and some of the middle schoolers already have their boosters), where we require proof of vaccination from every person who does any work on campus at all, in any capacity.
One thing that bums me out a lot about various community groups -- all of the Buy Nothing groups, for instance -- is that everything seems to be linked to some kind of social media that you have to be using in order to participate. If you don't -- and won't -- do Facebook or Twitter or anything like that (and even Discord seems like it's just yet another thing like that, which is why I haven't tried to get into it) then you can't be part of anything useful like that.
Totally agree with your point about social media (I also love the idea of this Discord and am so happy to hear stories about the good it's doing but I...just can't add *another* community that's on a screen to my life. I've quit the big social media platforms and moved to a few discords, a slack, and some text chains to keep up with geographically distant friends, and even without the doomscrolling time-suck that twitter and facebook were, that adds up to more phone time than I really want to spend...).
One thing I deeply miss about pre-COVID times was seeing the same folks regularly on my bus, at a bar, etc. Thankfully the vaccine has made me able & willing to see friends in person, but the loss of those daily/weekly not-really-relationships-but-not-nothing has been rough.
I've been lucky that I still see the folks who work at the places I go in my neighborhood all the time (the pet supply store, the coffee place, the grocery store -- which, I didn't go to grocery stores for like the first 4 months of the pandemic, and then I went to the more expensive "fancy" grocery store for most of the year because it seemed a bit safer than the Safeway, but the first time I went back to Safeway for groceries at least 3 different employees stopped me to say how glad they were to see me and they'd been worried about me, which was honestly the sweetest thing; I used to be a "stop in the store for 1 or 2 items every couple of days" shopper, one of the many ways COVID times have changed me). And, also, I have very recognizable hair, so even with masks people I only generally encounter occasionally always know it's me, which is kind of nice in terms of stranger-but-not-stranger interactions.
One amazing community that I've found myself a part of in the last few years is my Chicago neighborhood's freebox group. It's a private facebook group that started as a way for new parents on adjacent blocks to pass along all of the items that babies go through so quickly. Its borders have expanded to encompass a 3-mile square or so city area, and members post dozens of items a day ranging from Christmas gifts from kind but oblivious family members to freshly cooked food (I smoked pork and have several pounds to give away! I prepared a few extra plates at Thanksgiving. I bought this ice cream/sauce/snack and tried a bite but it's not really my taste. Who'd like it?) to condoms to art to furniture.
The main rule of freebox is that you can take as much as you like so long as you give, too--and you can't sell what you claim. Often someone will pick up an item, use it for a time, then pass it along to the next person who expressed interest.
Members often put out ISOs ("in search of") for items not only for themselves but for neighbors or friends or recent immigrants, and people come through.
The group also fosters community in unexpected ways. Last year, I went to pick up a few pantry items that someone was getting rid of. I messaged her to let her know I'd picked them up, and she responded with "hey, can I ask you a question?" It turned out she was desperately trying to get out of an abusive relationship and didn't know where to turn; a freebox member seemed like a safe bet. I ended up posting anonymously on her behalf to another local facebook group; people responded with suggestions and offers of places for her to stay. I put her in touch with them and she was able to leave her home with her son the same day, while her now-ex was at work. Another freebox member let her stay in her basement apartment rent-free for a month or two while she got back on her feet.
When I got divorced and became a single mom, I furnished my new home largely with freebox stuff. When I broke my arm earlier this year, neighbors dropped off food. My home is full of plants because folks trade cuttings all the time. It's such a comfort knowing that I have a community to turn to not only when times are good but when they really aren't. I'd love to see this kind of group become more common.
In November I joined my local Buy Nothing group, which has a very similar vibe. It's been eye-opening for me to realize how reluctant I am to ask for an item I need, even for something really small, but also it's been really inspiring to see how willing everyone is to help each other out. I wish I'd joined much sooner!
I love my Buy Nothing Group. I’m always amazed what I can get simply by asking (a tiny bit of spray paint or tiny toiletries from when my kids wanted to play hotel during the lock down) and also how grateful and excited people are for things I’ve given away very random things (3/4 of a vegan cheese pizza, dog food my dog couldn’t eat).
I am 78 and retired. Many physical problems. I cannot imagine how parents with jobs, needs, etc. etc. are managing, from babies, toddlers, up to teens and even adults "kids." But this culture has demanded for so long on pulling ourselves "up from our own bootstraps" that empathy is a foreign concept in community relationships. Especially across economic and/or education class distinctions.
I have been an outsider in my family of origin, my in-law family, my neighbors, and finally my spouse for a very very long time. I think that U.S. culture (which is all I know) encourages envy and competition from a stunted paradigm of progress and capitalism. Earn--Buy--Move Upwards--that is how you validate personal worth. Get the highest marks in school, go to the best schools, so you can earn the most money. Not so you can learn about life and people and history. Even religious organizations have been woefully unable to nurture caring for one's neighbor, or for valuing differences in thought or appearance or status.
Thank you for this essay. Much needed clarion call. I hope that the social lessons of this plague results in a generation, and the next generation, that begins to understand the utility and necessity of learning "we are all in this together." This will take time.
I think this asking for help is so so crucial. We’ve been so siloed and I think we have to figure out how to reforge that connection. We’ve had multiple instances of having to be the ones to ask for help this year and I look forward to returning the favour. I remembered this in May when my husband had to work all weekend and I got called to do media. I was like “I guess I’ll bring my kid…” and then realised he’d definitely fall in the pond behind where we were filming and I’d be stressed out. I sent an “oh hey….” text to another nursery family, kiddo had a great playdate, and I was able to do what I needed to do. They ended up texting me not to rush home because my son and their son were playing so nicely, they had been able to do some DIY since their son was occupied. Since then, we’ve exchanged favours, playdates, going over after bedtime so they can go out, self isolation food deliveries. A younger single friend is my son’s emergency contact because she has a flexible schedule, they are best pals, and she likes feeling connected. Our neighbour took my husband to the hospital when he fell in a hole at the playpark.
I think France’s crèche model is the perfect solution for the childcare problem. And maybe I would have considered having children if I lived there and had access to that. But even that shut down during the pandemic. So is there even a solution for this particular moment? I’m not sure there is (apart from living close to family and having one parent not work)!
As it is, being the childless couple in the family, my husband and I offered to help out but my parents and my sister are now fighting over us for a vacation. And they both really need it!!!! I’m going to watch my brother and nieces for a week each, but I also have to take time off from work to do it! So I’m not really sure there is a good solution!
It sure is. My best friend from college had her first in Brooklyn, second when they were in France. The crèche was the easiest way for them to get some sense of a life. In Portland, Oregon we just voted to fund universal preschool 3&4 year olds. I’ll be curious to see how that rolls out. Wish our government understood the math around investing in the future vs always in triage mode.
I read the title this morning and my eyes welled up with tears before going any further… but then I just felt numb… How many articles will it take for us to see and feel change? How many studies or surveys or reports?… changing deeply rooted systems are hard and will take time. So in the mean time I thank you for listening to us parents and continuing to keep this discussion going.
When I was growing up, my parents spent a lot of time at AA meetings, and they often had to bring me with them because they couldn't find a babysitter. I learned so much by watching them just sit and listen to people, finding small ways to just give each other a break--a ride, a cup of coffee, a connection to someone else who could help, too, or even a day of work to make a little money.
My dad had a friend who was frequently homeless and often in distress of some kind, and whenever I went home as an adult, my dad was always finding some reason to go find Jack and bring him something--food, a sweater, whatever--and we'd go driving around Boston to find him. Jack sat with my dad every day when he was dying, too.
I *think* I've figured out how to carry that with me now, to watch for people who could use my help--friends, but also strangers. I try. It always turns out to be fun in some way. A way to talk to someone else for a change, which is exactly the thing I learned from sitting in those meetings--that helping out helps me, too.
I keep thinking about how much my parents--especially my mom--could have benefited from more small, casual help. My mother might have stayed out of hospitals if someone had sat with her once a week to go through the terrifying task of opening her mail with her--if someone had found a way to ease her anxiety just by bringing a cinnamon roll and a letter opener. I didn't think of it either, by the way, because we're a society that thinks you should be able to do everything on your own and present a perfect vision of yourself to the world outside your home. But what if you just need someone to hold your hand while open that one big bill and help you talk through how to pay it? But like, weekly? On a schedule? A friend recently shared that she's having a terrible time organizing some really necessary tasks, and I thought of my mom and said, "Call me when you need to do them, and I'll blab on about nothing while you do stuff to take the sting out of it." And she actually took me up on it. That's how I want society to work, to really value the power of one small favor at a time. Not that it should take the place of like, health insurance and a living wage, but that there's substantial good to be done in really small ways.
Thanks for writing this, as always. Now where are my tissues?
"My mother might have stayed out of hospitals if someone had sat with her once a week to go through the terrifying task of opening her mail with her--if someone had found a way to ease her anxiety just by bringing a cinnamon roll and a letter opener."
This is me! It's amazing how these seemingly little tasks are the things I get most anxious about and too embarrassed to ask for help with.
It's hard! I used to work in a fundraising office at a college and the whole staff had to do year-end calls to donors, which used to make me scream, "Butbutbut...avoiding this is why I went to writing school!" But I developed a whole system of pacing my office between calls so I could just get through it. I just let myself get as weird as I needed to in order to manage it.
Parents are fighting parents, unfortunately, and the "schools open at all costs/schools are safe" parents are louder.
Some schools might be safe; incredibly unethical to pretend schools with too many students and windows that don't open are just as safe as ones with small classes and well maintained ventilation.
I feel almost bad saying the opposite but the past few month of having coworkers going through similar life situations has been so good for my mental health. I changed jobs internally at my company to a team where I have a boss and peers with little ones and the boost to my mental health of having a (male) boss mentioned Lady Bug/Cat Noir or a coworker honestly saying "can't meet now, nursing" is so much healthier, and more real feeling. Just seeing my travails with a 3 and 5 year old reflected in my peers experience is so important.
I want to get back out into the world again and mix it up again with the great diversity of humanity, but for now it's at least nice to not be the only person on the team who had their toddlers home all of last week because of potential exposure.
As a formerly high-achieving, now low-functioning/low-income disabled person, I've been on the end of "contributing or benefitting" that I never expected to be.
And after sitting in that uncomfortableness for some time, I think it's the wrong framing: contributing or benefitting.
Giver or taker.
The former, worthy, good and generous.
The latter, needy, unfortunate, and groveling.
In my "successful" days, I was benefitting. Benefitting from health and all the pretty thin firm young privilege that comes with it. Benefitting from "earning" jobs and kind gestures. Benefitting from the simple ability to eat convenient food, drive a beater car, walk wherever I wanted, work extra to save for trips and nice skincare and organic food.
In my disabled days, I'm...benefitting? I've been granted this newsletter subscription (thank you, thank you). I've gotten the blue badge that lets me park closer. My health insurance deductible is adjusted down in accordance with my low income. Some outstanding medical bills have been forgiven. My parents pay for my laundry to be taken away and returned folded.
Who gives, who takes? I'm too sick to work much, but I have the time and patience and breadth and empathy to hear my close friends' laments in a way I never did before. For them, I'm a safe space. I hope to help the swelling numbers of long haulers coming up on one of my diseases, ME/CFS.
I've given back my use of the trails, my pounding on the pavement, my pull on the gas stations, my patronage of processed food because disability forced me to. I didn't—couldn't—have a kid, gave that back to the planet in the form of just a few-fewer people needing resources, I guess.
We all give, and we all take, and it's so hard to see how. Disability is the only minority in which you can find yourself a part of in an instant. What would you want for yourself if you were disabled? If that thought chaps—"I would never"—let me remind you, no one chooses to be. And while many parents choose to be parents, many don't.
Most of my help comes from my family and friends, who "generously give" to make my life possible. But I wish they didn't HAVE to, because of the dearth of resources available to me. It's less of a gift to me and to them, and more of a survival tactic and act of loyalty—I become dependent, because what else can I do? What else can they do, as my family and friends? How much of the giving is "generous", and how much is resentful, desperate, or gladly given but hardly had?
This is where I think safety nets really, really matter.
Because people who *receive* gifts don't feel like burdens. People who NEED gifts do.
When a gift fulfills a WANT, it's a delight, a grace, a connection, a pampering.
When a gift fulfills a NEED, it's an emergency stopgap for a failure of society.
For me, this newsletter is a gift.
The break on medical bills is more like social justice.
Gifts should come from community.
Justice should come from society.
I don't love a system where parents' only recourse is the "kindness of community". I want the village raising a child to be a lovely thing, but I know it turns into a popularity contest. It turns into conformity and pleasing to stay in good graces. It turns into people who can't afford to give giving too much, and sneering from the judgy and privileged.
Reliance on community, when it means survival, means prioritizing your place in that community above all else. To be helped can change your dynamic in that community to the help-ee. The pitied. The inspirational one. The better-get-better one. The oh you again? We already helped. You always need help. Now, you're a mooch.
Justice—real justice—doesn't make these judgements. Communities do.
It's a glitch of individualistic mindset to think we'll all find a way within this system to get all of our needs met, no matter our circumstances. But I hope we can scooch our current system closer to meeting more people's needs, more of the time.
I see that happening in legislation, if anywhere. If not there, in company and corporate policies, from employee pressure. Community as a survival tactic is a temporary shelter, and these efforts should be saluted...but I hope they don't have to be permanent.
I just can't see another person dependent on a GoFundMe for medical care.
Because gifts should feel like gifts, not life rings. Giving should come from generosity and abundance, not desperation and despair.
So that when a neighbor does step in, it can truly feel like a gift—instead of, "am I going to drown saving this drowning person?"
I have chronic disabling pain. My fault, really, because in searching for affirmation of my talent I overworked my body until it broke. Not as an athlete but at a computer processing words and data. Perhaps I am living in a space like yours. Mostly I’m forgotten or just have to be left behind, my previous community is able bodied and works and travels. I don’t blame them for that, they have needs too. Of course many people don’t realize the needs of the disabled eg people who don’t shovel their sidewalk because it isn’t a barrier for them and it will melt soon enough. And that ignorance turns into our dependence. I don’t have any answers but I can offer my understanding.
It's not your fault. I broke my body at a computer too, but a lot of bodies don't break that way. Chasing your talent is one of the most noble things you can do. No one chooses to be disabled (absent the transdisabled which probably still is some sort of mental disability...)
It is impossible to see all the barriers disabled people face until you are one...and even as one, I miss the needs of others with different disabilities. Winter is a whole thing.
I found my first disabled communities online, and then slowly learned how to integrate back into a bigger abled society as a disabled person.
The hardest lesson I had to learn (am still learning) is how to ask for help. Someone on our NextDoor here is disabled and asked for shoveling help. Done, fixed. I wonder if your city offers services? Or if any plow companies have an account for pro bono jobs? It's possible...
Agree about the asking for help part...and also hard when people are isolated as many with chronic pain are...to have people you can reach out to. The city is a solid idea or your local community organization/neighborhood group.
I think it's important that entities like the City DO recognize certain ordinances as ableist and establish disability exceptions and workarounds up front...if nothing else, enquiring might help the City think differently.
I recently wrote our city about a wildly popular "walkable" downtown plan and asked what the plan was for helping car-dependent disabled people who had been refused wheelchairs through insurance maintain independence. They wrote back saying they hadn't even thought about it. The systems that fail us overlap, but there are places where they can create solutions—if they're alerted (and of course, motivated.)
Hadn’t even thought about it. 🤦🏻♀️🤦🏻♀️🤦🏻♀️
I see you. Feel you on the overworked computer pain. The hardest for me is constantly reminding people I’m in pain…especially those I live with.
It's so hard. I didn't truly understand what my family felt looking at me—appearing hale and hearty—until I went to a retreat for women with severe chronic pain. I was like, why am I in a room of such normal looking OH.
When it's really, really bad, people who know me well say my face "hangs differently." That's it. I feel like the walls should burst into flames if I get too close but, no.
So many good & important points, & much that I relate to personally. I believe that Justice requires we take care of our own - who is We? All of us. Who is Our Own? All of us. "Charity" is sloppy & unjust - society must take care of society - your point about the social safety net. And what happens when you don't have family, no parents or siblings or functional relatives or people who have the time or inclination to become part of your support system? Those people are We, too.
Also you make the point of giving & taking. What is giving, in our society? Too often it means something material, or maybe time. I love that you can see in your present role how much you are giving to those materially & healthfully blessed, who may be impoverished in ways that you are not. What we value...
Thank you. Yes, exactly. I am "fortunate" to have a family who "gets it" and helps, but what if they couldn't or wouldn't? I didn't do anything special to deserve them, I just won the family lottery. I did build my own community intentionally, but I did that as an abled person, and am not sure I could do it again, at least not in full, in my current state. The point is, no one should have to "deserve" any of this.
What is giving, what is granted, what is withheld, what is accessible...the more I learn, the more I see, the complex hands of cards we are all dealt, with good and bad in unfair measures for all.
What you wrote is brilliant and so true. That dichotomous framing is more of what divides us. Thank you for writing.
I think one big problem is not just empathy, it’s that there is so little slack in our systems. I am the auntie (honorary) who picks up kids from school and babysits them such. And I’m happy to jump in. But there also isn’t much space for reciprocation. Like before I was partnered finding someone to take me home from like dental procedure where they require someone to bring you home was hard. Because of course my friends who are parents (most of them) don’t have the leave to do that. I managed to break my elbow this summer and my partner had to go to office when I wasn’t really in a place to be alone yet. It took some juggling to find someone to sit with me. And there is only so much slack that non-parents can pick up at work before it grinds them down. All of this would be easier if we weren’t all stretched to the breaking point. It’s systems.
Parent of a 2.5 year old checking in, and I am internally screaming. I am so tired, my husband is so tired, my mom and in-laws are so tired from trying to help us. Everyone in my family is blaming everyone else in my family instead of being empathetic and realizing that we are all just so tired because society has failed us.
I’m trying so hard to find more energy and strength to get through - tweaking my diet, exercise, medications - but I’m still so tired. My house is a giant mess and I hate it but I have no energy to clean. If I could have people come over and be non-judgemental and just hang out with me while I declutter and clean that would be awesome, but I have no idea how to ask for that kind of support. That’s the kind of empathy I could really use right now instead of having family members blame me for being lazy and calling me needy.
I think you highlight something that is also driving folks with younger kids apart - literally every single situation right is different. Some people have parents close. Some people have easier access to babysitters. Some people can't shift their hours. Some people can do a half-day pre-school. Some people have medical conditions that prevent all of these things. I'm jealous of folks with grandparents close by, but I also realize that's not a magic bullet and will probably lead to some family stress down the line.
Yep. The grandparents have been and are super helpful, but we've butted heads over general parenting stuff as well as pandemic-related stuff and that has been very stressful. My mom is extremely risk adverse while my in-laws are much less risk-adverse, and the pandemic has made that worse. So you're not just butting heads over things like discipline methods but also things like quarantine guidelines.
Hearing your internal scream.
FWIW...I've been missing the kinds of friends I can do real-life stuff with. Not highlight-reel things like looking pretty for coffee catchups or having people over for tea n crumpets when the house looks/smells good. I want that friend that helps you clean out a closet or talks to you while you sort laundry. Or who asks me to come do that. There's a casual intimacy there that just feels good, better than something more polished.
I had a friend say recently, "Please call me to come do minor home repairs for/with you! I want to learn and I think it's fun." I think she's felt that same urge.
Despite the longing, I haven't quite evolved to the place where I can invite someone into my mess either. But I HAVE gotten to the point I've saying to distance friends, "Hey would you mind if I called you while I did chores? There will be some bkgd noise but let's catch up!" Usually they're like hell yes, if I can do my chores too! Then I disappear into a good long overdue chat and don't even notice that I'm cleaning my house. They don't see the mess, and neither do I, we both get shit done, so it feels win-win.
Just saying there are people out there longing to be this person for you, and there's also that less vulnerable baby stepping stone of calling.
Definitely! What makes me sad is that I remember now, offering to help people this way many times in the past, & no one accepted, it was like, that's not how their lives were organized, or they didn't believe I was sincere. But it sounded like fun to me!
I try to remember not to deprive people of the joy of helping, when it's sincerely offered.
The mess! My kid is five and in kindergarten so in theory I could take a couple days off work (since I have ample vacation time) while he's in school to clean, but in practice, five out of the last six times I have done that something has come up. My mother-in-law's neighbor threatened her life and I was over at her house checking in on her. My kid's teacher got covid and while he wasn't sent home due to a test-and-stay program, instead of doing the things I'd planned, I ran around frantically doing errands in case he tested positive a day or two later and we needed to isolate. My kid just plain got a cold and had to stay home. The schools closed for a day of district-wide covid testing. It's one of those sick jokes at this point, that I can't even take a day off work to declutter the house because something will happen to take over the day.
OMG this has happened to me so many times, too!!
This is so sad, so basic - just someone to accompany you while you do the work yourself - why does that seem so hard, so impossible? But that's the way we live now. My situation is radically different, yet I also totally relate - & wish I could come over & sit while you tidy!
Thank you! After my initial comment, I actually talked to a couple of friends about it and they're going to come over occasionally as well as hang out with me on FaceTime while I clean!
I’m a parent of a child under 5, and for me and many others the problem is that we’ve exhausted our employers’ patience. There was a lot more understanding in April 2020 when working moms (usually moms) had to stay home with their kids.
I’m glad to see articles like these because I hope that maybe somewhere, someone’s boss will see it and give them a break.
I hate that employers are even allowed to have "patience" around the simple state around being humans...it shouldn't require patience and grace for very human circumstances. And it shouldn't be short term. The fact that anyone is getting anything done in this climate is a frikken miracle.
So I work in government and everybody is justifiably mad that things aren’t better. But government workers are people too and dealing with pandemic crap. While there is work that doesn’t actually have to be done right now, there are lots of things that need to keep going. That’s a real tension.
As a parent of a child under 5, THANK YOU for "getting it", even though you are not a parent yourself. In my community there seems to be a direct split between those who continue to be cautious and take the pandemic seriously (those who have kids under 5 or work directly with kids) and folks who just kinda hand-wave it all off because "everyone can get vaccinated now, right?" Of course, that's a broad generalization, but there feels like there is often little empathy or support from those who don't regularly interact with anyone younger than teenagers.
One thing that I think has compounded the issue, especially for us, is when your community (or hopes of community) is built upon the common ground of having kids. My husband and I moved to an island in Puget Sound near the Seattle metro area (hi, island neighbor!) and left most of our friends back in Seattle. We're naturally homebodies and WFH even pre-COVID, so we figured we'd really get the push to build our local community once we had a kid. Well, I got pregnant in Jan 2020 and this THIS *gestures broadly* happened. We finally made the immensely difficult decision to start our daughter in daycare in March because not only do we feel social interaction is important for her, but WE need social interaction with more families even though it's going to continue to be constrained by COVID for the foreseeable future.
But I wish I could sing your broader point about communities and building empathy from the rooftops. You don't need to be friends with someone from every possible "group" to understand where they are coming from and the struggles they face or the value they bring to your communities, but exposure to people writ large is SO important and something that seems so easy to bypass as our social lives become increasingly digital and siloed (and quarantined... ugh).
I understand - we've made the hard decision to continue to carefully socialize with a few families for the same reason - our 2.5 year old daughter needs and thrives on the interaction. She comes alive in a whole new way when she's around other kids, especially older kids. She watches them, follows what they do, takes more risks, and giggles almost nonstop.
Not that it ultimately matters, but I really think she would have started walking sooner than 17 months old if we didn't keep her away from other kids in the early months of the pandemic.
I work in the office of a small private K-8 for 'gifted' kids, and, as of Friday, we had at least 50 people -- out of about 500 (between students/faculty/staff) out either because they were positive or because they needed to quarantine for 10 days after being a close contact with a positive (we have stricter COVID protocols at school than even the CDC ones at this point). At this point, every time I, and my coworker in the office, test negative (we do weekly PCR testing of _everyone_, all 500-ish folks) I'm mildly shocked tbh. And this is in a school where everyone takes things seriously, where everyone is masked at all times, where lunchtimes for the kids always take place outside, where pretty much every student is fully vaxxed now (and some of the middle schoolers already have their boosters), where we require proof of vaccination from every person who does any work on campus at all, in any capacity.
One thing that bums me out a lot about various community groups -- all of the Buy Nothing groups, for instance -- is that everything seems to be linked to some kind of social media that you have to be using in order to participate. If you don't -- and won't -- do Facebook or Twitter or anything like that (and even Discord seems like it's just yet another thing like that, which is why I haven't tried to get into it) then you can't be part of anything useful like that.
Totally agree with your point about social media (I also love the idea of this Discord and am so happy to hear stories about the good it's doing but I...just can't add *another* community that's on a screen to my life. I've quit the big social media platforms and moved to a few discords, a slack, and some text chains to keep up with geographically distant friends, and even without the doomscrolling time-suck that twitter and facebook were, that adds up to more phone time than I really want to spend...).
One thing I deeply miss about pre-COVID times was seeing the same folks regularly on my bus, at a bar, etc. Thankfully the vaccine has made me able & willing to see friends in person, but the loss of those daily/weekly not-really-relationships-but-not-nothing has been rough.
I've been lucky that I still see the folks who work at the places I go in my neighborhood all the time (the pet supply store, the coffee place, the grocery store -- which, I didn't go to grocery stores for like the first 4 months of the pandemic, and then I went to the more expensive "fancy" grocery store for most of the year because it seemed a bit safer than the Safeway, but the first time I went back to Safeway for groceries at least 3 different employees stopped me to say how glad they were to see me and they'd been worried about me, which was honestly the sweetest thing; I used to be a "stop in the store for 1 or 2 items every couple of days" shopper, one of the many ways COVID times have changed me). And, also, I have very recognizable hair, so even with masks people I only generally encounter occasionally always know it's me, which is kind of nice in terms of stranger-but-not-stranger interactions.
One amazing community that I've found myself a part of in the last few years is my Chicago neighborhood's freebox group. It's a private facebook group that started as a way for new parents on adjacent blocks to pass along all of the items that babies go through so quickly. Its borders have expanded to encompass a 3-mile square or so city area, and members post dozens of items a day ranging from Christmas gifts from kind but oblivious family members to freshly cooked food (I smoked pork and have several pounds to give away! I prepared a few extra plates at Thanksgiving. I bought this ice cream/sauce/snack and tried a bite but it's not really my taste. Who'd like it?) to condoms to art to furniture.
The main rule of freebox is that you can take as much as you like so long as you give, too--and you can't sell what you claim. Often someone will pick up an item, use it for a time, then pass it along to the next person who expressed interest.
Members often put out ISOs ("in search of") for items not only for themselves but for neighbors or friends or recent immigrants, and people come through.
The group also fosters community in unexpected ways. Last year, I went to pick up a few pantry items that someone was getting rid of. I messaged her to let her know I'd picked them up, and she responded with "hey, can I ask you a question?" It turned out she was desperately trying to get out of an abusive relationship and didn't know where to turn; a freebox member seemed like a safe bet. I ended up posting anonymously on her behalf to another local facebook group; people responded with suggestions and offers of places for her to stay. I put her in touch with them and she was able to leave her home with her son the same day, while her now-ex was at work. Another freebox member let her stay in her basement apartment rent-free for a month or two while she got back on her feet.
When I got divorced and became a single mom, I furnished my new home largely with freebox stuff. When I broke my arm earlier this year, neighbors dropped off food. My home is full of plants because folks trade cuttings all the time. It's such a comfort knowing that I have a community to turn to not only when times are good but when they really aren't. I'd love to see this kind of group become more common.
In November I joined my local Buy Nothing group, which has a very similar vibe. It's been eye-opening for me to realize how reluctant I am to ask for an item I need, even for something really small, but also it's been really inspiring to see how willing everyone is to help each other out. I wish I'd joined much sooner!
I love my Buy Nothing Group. I’m always amazed what I can get simply by asking (a tiny bit of spray paint or tiny toiletries from when my kids wanted to play hotel during the lock down) and also how grateful and excited people are for things I’ve given away very random things (3/4 of a vegan cheese pizza, dog food my dog couldn’t eat).
This is amazing.
I just have to speak up for my discipline to say Putnam is a political scientist! Now back to our regular, non-academic discussion.
FACE PALM; I know this and should've put "sociologists and political scientists"; fixing now!
It’s okay! We share much across the disciplines.
I am 78 and retired. Many physical problems. I cannot imagine how parents with jobs, needs, etc. etc. are managing, from babies, toddlers, up to teens and even adults "kids." But this culture has demanded for so long on pulling ourselves "up from our own bootstraps" that empathy is a foreign concept in community relationships. Especially across economic and/or education class distinctions.
I have been an outsider in my family of origin, my in-law family, my neighbors, and finally my spouse for a very very long time. I think that U.S. culture (which is all I know) encourages envy and competition from a stunted paradigm of progress and capitalism. Earn--Buy--Move Upwards--that is how you validate personal worth. Get the highest marks in school, go to the best schools, so you can earn the most money. Not so you can learn about life and people and history. Even religious organizations have been woefully unable to nurture caring for one's neighbor, or for valuing differences in thought or appearance or status.
Thank you for this essay. Much needed clarion call. I hope that the social lessons of this plague results in a generation, and the next generation, that begins to understand the utility and necessity of learning "we are all in this together." This will take time.
I think this asking for help is so so crucial. We’ve been so siloed and I think we have to figure out how to reforge that connection. We’ve had multiple instances of having to be the ones to ask for help this year and I look forward to returning the favour. I remembered this in May when my husband had to work all weekend and I got called to do media. I was like “I guess I’ll bring my kid…” and then realised he’d definitely fall in the pond behind where we were filming and I’d be stressed out. I sent an “oh hey….” text to another nursery family, kiddo had a great playdate, and I was able to do what I needed to do. They ended up texting me not to rush home because my son and their son were playing so nicely, they had been able to do some DIY since their son was occupied. Since then, we’ve exchanged favours, playdates, going over after bedtime so they can go out, self isolation food deliveries. A younger single friend is my son’s emergency contact because she has a flexible schedule, they are best pals, and she likes feeling connected. Our neighbour took my husband to the hospital when he fell in a hole at the playpark.
I think France’s crèche model is the perfect solution for the childcare problem. And maybe I would have considered having children if I lived there and had access to that. But even that shut down during the pandemic. So is there even a solution for this particular moment? I’m not sure there is (apart from living close to family and having one parent not work)!
As it is, being the childless couple in the family, my husband and I offered to help out but my parents and my sister are now fighting over us for a vacation. And they both really need it!!!! I’m going to watch my brother and nieces for a week each, but I also have to take time off from work to do it! So I’m not really sure there is a good solution!
It sure is. My best friend from college had her first in Brooklyn, second when they were in France. The crèche was the easiest way for them to get some sense of a life. In Portland, Oregon we just voted to fund universal preschool 3&4 year olds. I’ll be curious to see how that rolls out. Wish our government understood the math around investing in the future vs always in triage mode.
Oh that's interesting! I'll be curious how that goes too. And well said!
I read the title this morning and my eyes welled up with tears before going any further… but then I just felt numb… How many articles will it take for us to see and feel change? How many studies or surveys or reports?… changing deeply rooted systems are hard and will take time. So in the mean time I thank you for listening to us parents and continuing to keep this discussion going.
Why did this make me cry?
When I was growing up, my parents spent a lot of time at AA meetings, and they often had to bring me with them because they couldn't find a babysitter. I learned so much by watching them just sit and listen to people, finding small ways to just give each other a break--a ride, a cup of coffee, a connection to someone else who could help, too, or even a day of work to make a little money.
My dad had a friend who was frequently homeless and often in distress of some kind, and whenever I went home as an adult, my dad was always finding some reason to go find Jack and bring him something--food, a sweater, whatever--and we'd go driving around Boston to find him. Jack sat with my dad every day when he was dying, too.
I *think* I've figured out how to carry that with me now, to watch for people who could use my help--friends, but also strangers. I try. It always turns out to be fun in some way. A way to talk to someone else for a change, which is exactly the thing I learned from sitting in those meetings--that helping out helps me, too.
I keep thinking about how much my parents--especially my mom--could have benefited from more small, casual help. My mother might have stayed out of hospitals if someone had sat with her once a week to go through the terrifying task of opening her mail with her--if someone had found a way to ease her anxiety just by bringing a cinnamon roll and a letter opener. I didn't think of it either, by the way, because we're a society that thinks you should be able to do everything on your own and present a perfect vision of yourself to the world outside your home. But what if you just need someone to hold your hand while open that one big bill and help you talk through how to pay it? But like, weekly? On a schedule? A friend recently shared that she's having a terrible time organizing some really necessary tasks, and I thought of my mom and said, "Call me when you need to do them, and I'll blab on about nothing while you do stuff to take the sting out of it." And she actually took me up on it. That's how I want society to work, to really value the power of one small favor at a time. Not that it should take the place of like, health insurance and a living wage, but that there's substantial good to be done in really small ways.
Thanks for writing this, as always. Now where are my tissues?
"My mother might have stayed out of hospitals if someone had sat with her once a week to go through the terrifying task of opening her mail with her--if someone had found a way to ease her anxiety just by bringing a cinnamon roll and a letter opener."
This is me! It's amazing how these seemingly little tasks are the things I get most anxious about and too embarrassed to ask for help with.
It's hard! I used to work in a fundraising office at a college and the whole staff had to do year-end calls to donors, which used to make me scream, "Butbutbut...avoiding this is why I went to writing school!" But I developed a whole system of pacing my office between calls so I could just get through it. I just let myself get as weird as I needed to in order to manage it.
This was also a good one that described the feelings of so many I know perfectly:
https://judedoyle.medium.com/you-have-no-idea-how-tired-parents-are-right-now-f9f47dda7c25
Parents are fighting parents, unfortunately, and the "schools open at all costs/schools are safe" parents are louder.
Some schools might be safe; incredibly unethical to pretend schools with too many students and windows that don't open are just as safe as ones with small classes and well maintained ventilation.
I feel almost bad saying the opposite but the past few month of having coworkers going through similar life situations has been so good for my mental health. I changed jobs internally at my company to a team where I have a boss and peers with little ones and the boost to my mental health of having a (male) boss mentioned Lady Bug/Cat Noir or a coworker honestly saying "can't meet now, nursing" is so much healthier, and more real feeling. Just seeing my travails with a 3 and 5 year old reflected in my peers experience is so important.
I want to get back out into the world again and mix it up again with the great diversity of humanity, but for now it's at least nice to not be the only person on the team who had their toddlers home all of last week because of potential exposure.