This post brought something up for me, I decided to talk about this in a separate post because I didn’t want to derail the OP.
This is a point that OP made about mutual aid networks, and why they’re not a substitute for public policy:
forcing me to be vulnerable to my neighbors’ whims for my survival is not justice and it is not liberation.
I feel this. This is how you get toxic cults, hyperconformity, and witch hunt culture.
I might have answered “yes, let’s go for it” 25 years ago, when I was 21 and still lived in a big city and still knew other Jewish people besides my own aging family, didn’t have chronic pain, and had more economic privilege than i do now.
The irony is that what made me say things like this was not having to actually depend upon mutual aid networks outside of my own family. (And lots of us don’t even have that.) It’s easy to say “we can all rely on mutual aid” when 1) you don’t actually have to do it and and or 2) you’re accepted enough to have access to it.
Basically you’re saying that only someone totally accepted by an informal group of people, is entitled to survival. If you’re a minority or a pariah relative to the space you’re stuck in, what then?
I don’t like the idea of turning survival into a middle school popularity contest.
Yeah, there’s this attitude that if you’re a Good Person ™, then you obviously won’t have any trouble finding an accepting and supportive community, and well, *laughs bitterly in neuroatypical*
Yeah
Also, I originally thought I should leave this post alone, but I have changed my mind so I will now add.
I’ve been in supportive communities full of well-off, approximately or largely neurotypical people which completely, comprehensively failed in a crisis for the simple boring reason that we collectively needed more person hours of care than usual… but we also collectively had fewer to give. And I cannot even begin to imagine how much worse that would have been if we were more marginalized or less abled.
I was a little bit involved in putting on the north east regional Rainbow Gatherings, the first couple of years. These gatherings were generally held in the national forests, which means the mountains. Over and over again, there would be clashes in Council where a wheelchair user would ask for an exception to the No Motor Vehicles rule because their wheelchairs weren’t up to the challenge of the steep terrain. There were always purists who objected to the exception and usually one purist would volunteer to push the wheelchair user wherever they wanted to go. Then after a couple of hours, the person doing the pushing would get bored and just abandon the  wheelchair user beside a trail, forcing them to beg passers-by for help getting back to their camp.
The Rainbow Gatherings were just about the most mutual-aid-based events of their time. They worked so well for most of their attendees that FEMA studied them as a model for disaster response, but there were always these glitches around accessibility. Maybe in a culture that has always had a strong ethic of mutual aid, where people were brought up in it, there wouldn’t be these glitches, but most of us are products of late capitalism. We just aren’t formed for it. We are too used to self-indulgence. We’re not there yet.
arghh tumblr fails forever there is a lot of good discussion and points being made about community, anarchy, and networks but there’re all in different sub-branches of this post
No one’s survival should be dependent on other people’s [strong and sustained; see example above re: wheelchair users in Rainbow Gatherings] goodwill.
As a Gen Xr with a lot of Gen X friends, I’ve seen this experiment play out with all of our Boomer parents, and with the seniors my parents are friends with.
Many of them -are middle class [1] in particular, and many never had (and thus gotten burned by) the “let’s all live together as a bunch of buds” experience in the 60s/70s. So they may still harbor some utopian ideals about what a mutual aid community and single-generational household will be like.
And they always seem to find out that these community situations rely on 1) none of them actually being too old, 2) none becoming disabled, 3) none of them being poorer than anyone else. Even if they can save money by combining households, there still gets to be a point where they’re all collectively too old to provide the kind of support they imagined over the long term.
I’m seeing enough where my mom’s friends end up moving away because they have to move in with their kids, and nobody planned for this. (Gen Xrs may be anticipating this issue more than our own parents are.)
If my mom’s friends can’t even keep a writing or game group going because of this or that person moving away and into assisted living or in with their kids, then imagine an actual mutual aid network trying to survive *every person in it getting old.*
[1] this is important, because it’s a middle class specific issue at a point in history where aging middle class no longer have pensions/robust health care/have lost their retirement savings. If poor, they are more likely to already live in a multigenerational household or may have never *not* lived in one. (Or they may have nothing at all… which sucks.) If rich, they can afford assisted living or the support required to remain in their own same-age community.
It’s one thing to volunteer to get someone’s groceries once a week. It’s quite another to help them use the toilet twelve times a day. The latter is absolutely not sustainable on a volunteer model. Someone who is doing that has a full time job, and deserves to be paid for it.
And people in need of care are often not sweet, polite, people. Some of them are. Some of them aren’t. Some of them are in pain, find reviving help humiliating, have other frustrations in their life, and will consistently take that out on the people supporting them. Some of them are appalling, and cruel and verbally abusive.
Those people, the ones who hurl racial slurs at support staff, who make cruel comments, who hurt people, also deserve care. There’s no level of awful a person reaches where they deserve to stave to death or sit in their own faeces for hours on end.
People who will volunteer to spend hours a day with someone who is cruel to them are very rare. People who have the time to do an 8 hour volunteer night shift even one day a week are very rare.
This should be paid work. It’s impossible to provide care to meet essential needs without paying carers. People whose communities hate them, for good or bad reasons, deserve to have their basic needs met, and you can’t do that on goodwill.
People deserve help even if they don’t like people or don’t have the emotional/mental spoons to deal with people or are “weird” or don’t share the same beliefs and opinions as the dominant group.
Also: there actually never has been a time when we were magically better than this but then Capitalism™ Ruined Us.
This has been a huge, screaming, massive challenge to humanity throughout. time. Including back when these “mutual aid networks” were all that existed because the entire world that interacted with you consisted of you and the hundred-odd people of your village (if it was a big village). And people still fell through those cracks, and were subject to all of the shit the above thread talks about and those “voluntary mutual aid networks” failed them, too.
Or worked based on all the things that people who have no choice but to rely on family (or “friends”) that hates them, or wants them to be something they aren’t, or whatever, still suffer through today. It happens all the time. People are still dependant on mutual aid networks when the institutions fail them and quite a lot of the time it’s really bad.
Because the “mutual aid” they have access to comes with emotional toxicity at best, and abuse of all kinds at worse. Because interpersonal relationships based on goodwill and volunteer time have the potential to get really, really messy on the “social performance” end.
And we as humans have always struggled with this. And still struggle with it in every iteration of society that exists. And if you don’t recognize that these problems are not ~*a product of capitalism*~ but are a product of humans being messy, difficult people, you cannot figure out the solution, because you will imagine that there’s some perfect pure exemplar that we existed in some day in the past. Or somewhere else. Or … .somehow.
There isn’t. We haven’t figured it out yet. We’re still working on it.
I am a pastor. I have seen informal mutual aid networks do miracles, and I have also seen them fail spectacularly. Here are two examples from the same community, a tiny rural farm town.
The first case was a white man in his 40s, a farmer, who was deeply injured on the job. Six months in a wheelchair, a year until he was back fully mobile and able to fully do all the farmwork. His wife had a day job and his daughters were in school, they could do some of the work of running the farm but there was a lot that they just couldn’t do, especially that first month he was in the hospital and a rehab facility, both an hour’s drive from home. So his neighbors and other farmers who were members of our church gathered in the church basement a few days after the accident, and made up a schedule: who was going to take care of his livestock on what days, who was going to plant what field, who was going to do the spraying, and come harvest time, who was going to harvest it. They came together, they took care of things so that his wife and kids could focus on taking care of him and the farm and livestock would keep going and the family wouldn’t lose half its income for the year. Mutual aid worked perfectly in that case, exactly as it was supposed to. A dramatic crisis that will be resolved eventually, after which things can go back to normal? A crisis that happened to a man who was related to half the people in town? Yeah. They were all over that.
The second case was not like that. The second case was a family who’d lived in town for thirty years at that point, but weren’t related to anybody or married in to any of the prominent families. About fifteen years earlier, things had started going wrong for the family. Chronic illness. Car accidents. Tragic deaths. By the time I came to town, the least disabled members of the family were the two teenage boys and their eighty-year-old grandmother with heart problems. Nobody in the family had any income besides social security and disability and other welfare programs. The boys were good kids but everyone in that family who was still alive had so much trauma and grief, and like most teenagers the boys really didn’t know how to handle it. Especially since their family had thoroughly fallen through the cracks. Everybody liked them; almost everybody had forgotten them. None of the men of the community took an interest in those boys to give them male role models that they lacked since their father and uncle had died. Nobody took the mother or grandmother to their medical appointments. Nobody stopped by to help fix the things in their house that broke, or to show the boys how to do basic maintenance. The grandmother pretty much only left the house for medical appointments and grocery shopping; the mother wasn’t even able to do that much. Once a year the church had a work day and would send a crew of people over to whack their yard into some semblance of order and do things like cut down the saplings growing out of their foundation. That was about the extent of it. The first moment of crisis, the church and the larger community of the town had been there for them. The long, slow slog of just dealing with the every-day shit of multiple disability and trauma, that was what the community couldn’t handle. Especially since they were “newcomers” with no ties of blood or marriage to any other family in town.
Mutual aid can work wonders, but it is not enough. It has never been enough.
This is something most people don’t know, and the ones who think social aid should be in the hands of private charity and churches actively try to obscure: the only times churches have successfully been the entire social welfare system has been when the churches were tax supported. In the middle ages, in most places people paid a tithe–a ten percent tax on everything they produced–to the church. Some of it went to pay the priest and build and maintain church buildings and whatnot, some of it got sent off to Rome, but a lot of it stayed local and went to things like making sure nobody in the parish was hungry and everybody had a roof over their head and people who were sick got taken care of. It wasn’t perfect (for one thing, it excluded both Jewish people and people with no home parish), but it was broadly functional. With the Renaissance and Reformation a lot of those functions got passed along to civil government in many places. But whether secular or church, the system broke down during the Industrial Revolution.
The old system simply could not cope with the explosive growth of cities and factories and the accompanying change of lifestyle. It couldn’t. Poverty, illness, and disability increased dramatically with the Industrial Revolution. In response, Christians formed huge voluntary social service networks, some of which still exist today (although many have shed their Christian affiliation). YMCA and YWCA. Red Cross. Salvation Army. Many others that you’ve never heard of. These organizations did huge amounts of work to feed and clothe and educate and house people and take care of the sick and the disabled. And they failed. They were utterly overwhelmed by the scale of the need. Huge amounts of people put in huge amounts of time and money, and it was not enough.
Two things turned things around (at least for white people, things still sucked for people of color who were largely excluded from all forms of help both public and private):
labor laws which protected poor and working class people from being exploited and endangered by their employer. Things like minimum wage and overtime and Occupational Health and Safety and disability insurance and all of that stuff. The things unions fought for and won.
Government welfare programs, paid for out of taxes, everything from SNAP to Low Income Heating Assistance Program to disability to Social Security to Medicare and Medicaid.
Labor laws minimized the people needing help by making it easier for people to earn enough to care for themselves and their family. Government programs helped all white people who fell through the cracks. And you know what? It worked, pretty much. There was more upward mobility than downward mobility. Life expectancy lengthened. Average health got better. There were fewer people in dire need. There were fewer people in poverty, and “poverty” meant something less dire than it had in previous generations. Getting help didn’t depend on being the sort of person nice Christian people liked. Private charity was a supplement to welfare, not the whole of it, and in that capacity it worked fairly well.
And then, with the Civil Rights movement, more of these things became available to people of color, and we as a society decided we’d rather deny these things to white people than give black people equal access. And people suffered, and continue to suffer, because of it.
The way out of this mess is not to form more mutual aid networks. It’s to get the labor laws and unions the power they need to actually do what they’re supposed to do, and expand the government social safety net.
“Those people, the ones who hurl racial slurs at support staff, who make cruel comments, who hurt people, also deserve care. There’s no level of awful a person reaches where they deserve to stave to death or sit in their own faeces for hours on end.
People who will volunteer to spend hours a day with someone who is cruel to them are very rare. People who have the time to do an 8 hour volunteer night shift even one day a week are very rare.”
This. The last person I heard use the n-word? Was someone who needed care, and who was annoyed at a caregiver for not doing so quickly enough, and therefore called her, well… that. And other stuff besides.
This idea that when we’re no longer capitalist everyone will just have endless reserves of Nice to offer someone who called them a n- b- yesterday is uh, steaming bullpucky.
But the person who said that still needs care, and should not starve or otherwise die because she’s a racist jerk.
Hundreds of Frito-Lay workers are on day nine of a strike at a production plant in Topeka, Kansas that makes Fritos, Tostitos, Doritos, Cheetos, and Funyuns.
In recent days, the appalling working conditions at Frito-Lay have gone viral on Twitter—fueling a national conversation about the leverage low-wage workers have at this particular moment to demand more from large corporations after years of stagnant wages, few opportunities, and a deadly pandemic.
“If protesters destroy a police car, and police destroy a protester’s eye, both will be called ‘violence,’ and it won’t be made clear that what the police did caused far more human harm and is more brutal and inexcusable. Police cars are replaceable. A journalist’s sight is not. Destroying property is not in and of itself a violent act.” -Current Affairs (finally stepping it up)
some people deserve to die but the death penalty is not the answer, as soon as you give the government the ability to kill without repercussion they will find some way to weaponize that against political enemies and minorities. the solution? let me run around with a baseball bat
This whole obsession with wheelchair users struggling on foot down the aisle at their wedding or across the stage for graduation is 100% powered by ableism.
“The heartwarming story of how one woman worked for 8 months straight so she could escape the horror that is being in wheelchair for a few short minutes to struggle slowly and painfully down the aisle on her special day.”
“the horror that is being in a wheelchair” bitch it’s hella better than struggling slowly & painfully down the aisle ffs
“Despite being permanently paralyzed, her one goal since her accident has been to walk across the stage for graduation. The whole crowd gave her a standing ovation and broke into tears when she dragged her paralyzed legs across the stage with the help of leg braces and a walker to collect her diploma, after which she immediately sat back down in her wheelchair, which she will use to move around for the rest of her life.”
How the hell is this an inspirational story? This person needs better goals. And a therapist.
They’re toxic in an even greater way because as a disabled person, I didn’t realise till I was reading this how much I had internalised that. I genuinely have had feelings of fear and shame about using a chair or a walker if I get married. And why? Because I’m constantly seeing “heartwarming” stories about disabled people who shed their mobility aids for that moment. Why the hell am I afraid of using them to get married? Anyone who marries me or attends the wedding will know I need them and love me regardless.
Bless this post for making me realise I’d internalised that shit.
These types of stories teach people, both abled and disabled, that using mobility aids, especially wheelchairs, is inferior.
here are some beautiful brides in chairs with dresses they ROCK. I know a lot of disabled ppl with internalized ableism think they “won’t look good” if they use their chair, but here’s some literally gorgeous gals for ur consideration
(that last ones cute as fuck and i teared up at it)
Who needs a bouquet when you can be a bouquet?
I made my addition to this post in June 2019. Its now January 2020 and I no longer feel guilty about the idea of going down the aisle one day with mobility aids.
God bless the disabled community, y'all saved me from some internalised bullshit
This post floated by a few months ago, and I remember something to effect of there’s a difference between recovery and refusal. That is, like, I have a friend that suffered an incomplete spinal cord injury. He can walk again now, and I don’t think I’ve seen him use his chair in a few years. When he walked at his graduation, it was to show off his recovery. That he wasn’t quite ready to go through a full day upright, but he could walk across a stage, unassisted, and soon he would be able to do that every day. There’s also a difference in someone like me choosing to not use a mobility aid. My mobility is intensely fluid, especially seasonally. So, I would plan a summer wedding. And while I love my cane it can also be the biggest pain in my ass, so I’d want to just go unassisted. But that’s normal for me, at least right now. I can walk without an aid during about half of the year. It’s reasonable to assume I can make it through one day without it. All of that is different than someone that is fully and permanently paralyzed, that will never walk again, dragging themselves along because they feel that’s somehow better. Overall though, my biggest takeaway is fuck the media. Because disabled people should be able to make whatever decision they want without the media turning it into this grand inspirational story.
Disabled people should be able to make whatever decision they want without the media turning it into this grand inspirational story.
THIS.
Couldn’t pass up the opportunity to add my disabled joy to this post. Look at this love!
Taking the opportunity to add these photos of Jessica Kellgren-Fozard and her wife Claudia, from this twitter post. Jessica also has a youtube channel that’s primarily about disability and chronic illness and LGBT stuff (it’s amazing!)
I would also like to personally share, Annika Victoria who ALSO has a youtube channel. This photo was taken from her instagram - she made her wedding dress dress herself, BY HAND. Her youtube channel is mostly DIY fashion and sewing tutorials. I love her so much, she’s so unapologetically herself and informative
I also wanna add these pictures of Ade Adepitan fucking rocking this badass suit at his wedding! Give my fellow disabled mascs some love too
look how much fun they’re both having! yes!
and also this couple, who are both wheelchair users
this is from their beautifully coordinated wedding!
