The crowdfunding paradigm is not itself fair

March 12, 2017 3:10 PM

Buzzfeed longform on who gets funded and who gets left behind in crowdfunding healthcare costs.
posted by ActionPopulated (18 comments total)

GOP on healthcare costs - "Have you tried begging?"
posted by The Whelk at 3:19 PM on March 12, 2017 [30 favorites]

This was always the most horrific development; your life depending on how good your social media skills are, how attractive and deserving of 'help' you can make yourself appear to the masses. A competition with others - you raise enough money to save yourself, pushing a kid with leukaemia who's trying to raise money too off the ranking. This is indeed a dystopia.
posted by Jimbob at 3:35 PM on March 12, 2017 [60 favorites]

One huge problem I see with a lot of crowdfunding campaigns is that most people's social networks tend to consist of people who are in similar financial situations. The people who need it the most have poor friends and family. Otherwise they wouldn't need a fundraiser. If you don't go viral it's extremely hard to raise more than a couple hundred dollars. Most trans groups don't allow fundraising posts because almost all members are saving for their own surgery/living costs or paying off debt.
posted by AFABulous at 4:06 PM on March 12, 2017 [39 favorites]

This is what's driving me so crazy about the healthcare debate. People keep framing it as, "People will be dying in the streets." No. They'll still be alive. They'll be alive, in so much debt they'll never repay it, and embarrassed to talk about it.
posted by potrzebie at 4:11 PM on March 12, 2017 [5 favorites]

The number of steps between this and the Hunger Games is a lot fewer than it should be.
posted by jacquilynne at 4:22 PM on March 12, 2017 [8 favorites]

At this point in the dystopia I believe people with outstanding medical care debt will be lucky to be just "embarrassed" as the spin machine blames them for rising costs of care, and the honest insurance having people must foot the bill for the moochers who don't have insurance or can afford the bills and must pay their bills to society in another way etc.
posted by lmfsilva at 4:23 PM on March 12, 2017 [1 favorite]

Crowdfunding for health care is so enormously wrong that I have trouble articulating why because it seems so blindingly obvious. Not the act of crowdfunding itself, but any sort of acceptance of that paradigm on a societal level. It is begging! We are forcing people to beg and then judging them on how good they are at it. Health care is a human right and should be provided by the government, full stop. There is no compelling reason why any human being should be denied it or otherwise have to do a horse-and-pony show to prove their worth. It is supremely fucked up that a kickstarter for health care is something that exists, doubly so that it exists because people need it.
posted by grumpybear69 at 4:24 PM on March 12, 2017 [49 favorites]

Crowdfunding healthcare? Sounds great, but you'd probably need some kind of national scheme to make it really effective - make sure that not just people who know how to do social media marketing can raise money - heck, maybe you could have everyone chip in a little bit - not a lot, but just enough to make sure, on average, everyone's covered. To make it really cost effective you might need some sort of centralised healthcare body too, to make sure provision wasn't exploited for profit and that the money was spent effectively... it seems pretty disruptive but the benefits are clear, right? This could be revolutionary in terms of public benefit!

*stares hard at the camera*
posted by parm at 4:30 PM on March 12, 2017 [93 favorites]

Oh Christ, this is the horrifying end game of applying the "free market" to social services, isn't it? Like if they keep saying "free market" we won't know they mean "only the people we personally find deserving."

What, honestly, is wrong with these people? How strong does your absolute disgust at being forced to contribute infinitesimally to the basic human rights of someone you don't like have to be for you to genuinely believe something like this is a desirable situation? How much do you have to hate them?
posted by schadenfrau at 5:55 PM on March 12, 2017 [12 favorites]

This thread is like a bat signal to me, since I research crowdfunding.

And yes, the idea of crowdfunding healthcare as a general policy is horrifying.

Crowdfunding works surprisingly well for creative endeavors. Crowdfunding of theater projects results in high-quality theater, for example. And crowdfunding is actually less biased than VC when funding companies, both in terms of geography and gender.

BUT crowdfunding still has biases that make it horribly inappropriate for life-or-death situations. On average, over 50% of funds come from friends, family, or community - if you don't have a wide (and pretty rich) social network, that can hurt you. And, though crowdfunding is less biased than other forms of fundraising, racism can still be an issue unless sites work hard to eliminate it. Thus you can get real biases based on race and social standing that further make crowdfunding bad.

So, in short: Crowdfunding a startup or creative endeavor- good. Crowdfunding healthcare - bad
posted by blahblahblah at 6:19 PM on March 12, 2017 [19 favorites]

My mom, a previously very smart and caring women with a PhD, brought this up offhand to me and she's like my weird canary about what is happening out in Fox News conservativeland. She just kind of handwaved and said, "well people are just paying their healthcare bills online now, you can put up a page and people will just pay you!" I was aghast and then said, "uh, while that is a thing, it's not a viable thing for most if not all people." Then I changed the subject because talking with my mom about "the world these days" sends me into a spiraling depression. But that's how I knew that this was a talking point sure to be somehow a diss on millenials and the rest of us wacko liberals.
posted by amanda at 8:18 PM on March 12, 2017 [2 favorites]

This reminds me of the increase in crowdfunding proposals I'm seeing in science as funding rates continue their slow demise, which also is.... oh hell, let's call it fucking problematic and ineffective. The problem with crowdfunding is that it's forcing everyone trying to use it to look after themselves to be judged not only on their medical need or scientific merit but also on their skills at selling themselves to an audience of the general public who may or may not actually be qualified to evaluate these things.

It's terrifying, because it's like adding a whole new career as a bloody internet marketer onto your first as a researcher, your second as a teacher, and if you have any hope of securing any NSF grants traditionally, your third as a scientific outreach specialist. At what point do you accept that demanding that people specialize in all of these things is going to ruin anyone's ability to actually master any of them? And how do you then compete with people who can specialize in the marketing skill necessary to kicking off multiple successful crowdfunding initiatives?
posted by sciatrix at 8:41 PM on March 12, 2017 [9 favorites]

This article caught my eye because a large subset of my social circle is trans, and so I've seen many of the types of fundraisers AFABulous mentions roll across my various feeds. Not even surgery fundraisers usually, that's a pipe dream for most of the folks I'm hanging out with; more like funds for legal name change paperwork, for hormones, hell even just for daily living expenses. There's one friend-of-friend couple I know of who are surviving on one partner's disability check and whatever bits they can get through crowdfunding, it's pretty heartbreaking.

I see all these posts, as a person in these social circles who is comparatively well off but not exactly rolling in cash, and I get decision fatigue. Who needs my money more right now, the person who just lost most of her money in a mugging right after losing her job or the people living on one person's worth of SSI? Whose medications are most necessary? Whose housing situation is most unstable?

And one of the end results sometimes, and I'm terribly ashamed to admit this as a progressive, is that I catch myself looking for holes in people's stories. Do they describe an instance where they spend money that could have gone to medicine on something less immediately life-saving? How many times have they asked for money in the last several months, could they have done something to hustle up some cash in that time frame?

I know, in my head and my heart, that poverty is a structural problem and that the idea of what some poor people deserving money more than others is gross. (And often weaponized against trans people, since hormones and legal gender changes aren't perceived as medically or psychologically necessary; fuck that noise.) But this is what the slashing of the social safety net reduces us to; seeing endless examples of need in our midst and being forced to pick who deserves aid most by our arbitrary internal rubrics. Keeping poor and middle class people fighting amongst themselves for the scraps, which is exactly what wealthy and powerful people want. Why not just give all that funding and decision power to the government, hospitals, whatever other parties are most relevant, and take the fighting for scraps and who "deserves" aid more out of the picture?
posted by ActionPopulated at 9:31 PM on March 12, 2017 [12 favorites]

UK - crowdfunding Healthcare since WW2. Now it seems Theresa is looking to destroy our beautiful, shining example of compassion.

Internet Crowdfunding of anything someone relies on to survive (like their health) is just so wrong.
posted by twistedonion at 2:17 AM on March 13, 2017

Crowdfunding healthcare isn't the logical endpoint of late-stage capitalism; hiring an attractive and racially "deserving" proxy to pose as you for your healthcare crowdfunding effort is.

It's a cinch that's already happened, is happening, though.
posted by Western Infidels at 7:09 AM on March 13, 2017 [2 favorites]

And one of the end results sometimes, and I'm terribly ashamed to admit this as a progressive, is that I catch myself looking for holes in people's stories.

We just had a long thread in one of my trans groups about a fundraiser for a kid who'd had top surgery that had gone terribly wrong. He was asking for money to have another surgery to correct the uh, abomination. No one could believe (from his pictures) that the surgeon was so incompetent (he wasn't even billed for the right type of top surgery) and that there must be another explanation. People were scouring his Facebook page, which had scant details and a weird timeline.

Yet this 19 year old made his $7500 goal in two days, so who the hell knows anymore.

Lots of my friends have fundraisers. These are people I spend hours with seeing in person and/or talking to online every week, whose financial situations I'm familiar with, so those are the people I'll contribute to first. (I'm currently unemployed.)
posted by AFABulous at 7:56 AM on March 13, 2017

Crowdfunding healthcare? Sounds great, but you'd probably need some kind of national scheme to make it really effective - make sure that not just people who know how to do social media marketing can raise money - heck, maybe you could have everyone chip in a little bit - not a lot, but just enough to make sure, on average, everyone's covered. To make it really cost effective you might need some sort of centralised healthcare body too, to make sure provision wasn't exploited for profit and that the money was spent effectively... it seems pretty disruptive but the benefits are clear, right? This could be revolutionary in terms of public benefit!

*stares hard at the camera*

Sounds like someone needs to hear that politics is the art of the possible and that anyone advocating for a policy more thorough than universal insurance is an unwashed dreamer.
posted by Rustic Etruscan at 11:21 AM on March 13, 2017 [2 favorites]

There is a politics to who gets funded. This is no less true in a UK context, where we do have universal healthcare, but still have these fundraisers. Trans health care on the NHS, for example, takes years of waiting lists to get through. It's a rare day I don't see someone who's decided that they're too good for that, they're special, they deserve quicker access than everyone else, so here's a fundraiser so Jane or Jack or whoever can skip all the queues and go private. Posted to trans groups. Most heavily populated by those on the same waiting lists.

Meanwhile, non-binary people and even binary trans people with different gender expressions (or who are victims of a disturbing tend if racism at the country's GICs) are turned away from the NHS and have no option but to go private. Depending on where in the country you live, there may be awesome organisations, such as Trans Healthcare Leeds, which is essentially a charity that takes donations and funds access to trans-related healthcare for those who have been turned away by the NHS or are otherwise unable to use it. If you don't live in the right part of Yorkshire for that, you may have to start fundraising. And find yourself effectively out-competed by the self-absorbed and impatient (I'm really trying to be as charitable as I can here) who have more mates on Facebook.

So that's the British trans angle on the whole thing. Setting that aside, as a poor resident of Britain, I see crowdfunding as deeply unfair in other ways. It's not just about your social media skills, it's about your social capital. The local roller derby players and mainstream-queer community crowdfund the fuck out of each other (and all their many many mates) despite far and away not being those most in need. People in our mutual circles are homeless, are unable to eat, are ineligible for benefits for a variety of reasons, struggling to eat... and people with comfortable jobs and employment are throwing money at each other to travel internationally, so they don't have to stop going out or eating at restaurants to save up, I guess. To replace keyboards or electric guitars that have been stolen, when other musicians are selling their instruments to eat, and the person could easily have afforded a less fancy replacement. It boils my blood to see comparatively privileged, comfortable people, display such a sense of entitlement, and worse, be rewarded for it, while those with more urgent needs are ignored, and those with the biggest needs don't speak up to ask for help. It's about social media skills, social capital, and privilege: the privilege of knowing, being certain that you deserve whatever thing, so of course it's fine to ask. Meanwhile, I have friends who are starving, afraid to ask for help, and effectively reliant on the willingness to share of those with barely anything. Those with lots don't think they've got enough, and are too busy feeling sorry for themselves and each other to help out those who genuinely need it.

You're writing a book, or making an album, or setting up manufacture of a doohickey? Go crowdfunding. Anything else, anything personal, anything human? Fuck crowdfunding. Fuck it right into the ground. Fuck it forever.
posted by Dysk at 2:55 AM on March 14, 2017 [2 favorites]