An Infant Orphan Election at the London Tavern, George Elgar Hicks ‘My point is not that everything is bad, but that everything is dangerous, which is not exactly the same as bad. If everything is dangerous, then we always have something to do. So my position leads not to apathy but to a hyper- and pessimistic activism. I think that the ethico-political choice we have to make every day is to determine which is the main danger.’ (Foucault) Advocating for Life Itself: Crisis and Markets of Moral Worthiness

Dr Matt Wade Postdoc Fellow Centre for Liberal Arts & Social Sciences [email protected] @MattPWade A (very tentative) theory of positive precarization Through personal crisis crowdfunding, we are witness to governance by positive precarization, where we are urged to embrace our vulnerability with resolve to finding solutions through better utilizing all our human capital (in this case through narrative appeals of moral worthiness) … This reconfiguration of recognition and redistribution creates distortions not just in who receives support, and for what conditions, but in the very practices of citizenship by which we are governed and model our ethical dispositions… (for ‘the crowd’ decides who is worthy of aid) This exploiting of personal capital can have positive outcomes for some, but it also introduces biases and further marginalization of those who already lack recognition and care. Precarity as a default setting… • In the US, threat of precarity has become a default setting of everyday life for many • 44% of US households would struggle to cover emergency expense of $400 • Approx. one quarter of Americans forgo health care due to affordability, concerns over debt etc. • Many personal bankruptcy claims have also been attributed to medical expenses, incl. 62% in 2007 (just before the GFC). • 51% of adult Americans will spend at least a year below the poverty line (Rank and Hirschl, 2001) • Health care rationing has long been tied to one’s economic productivity (e.g. bootstrap and Poor Law ideals, perversity thesis of welfare, valorization of self-help entrepreneurialism, employment-based health insurance etc.) Crisis crowdfunding as positive precarization Crowdfunding – A brief overview • Crowdfunding is ‘the practice of funding a venture by raising money from a large number of people who each contribute a relatively small amount’ • Rivals the entire venture capital industry in size (Assenova et al., 2016) • Now rapidly normalized, around one quarter of American adults have contributed to a campaign, and 3% have mounted their own (Pew Research, 2016) • Crowdfunding for medical expenses now easily the most common form of campaign • Between 2011-2014, number of medical campaigns on GoFundMe increased from 8,000 to 600,000 (with 1m by early 2016), while donations between early- 2015 and mid-2016 totalled $USD930m for medical campaigns • GoFundMe previously took a cut of 7.9%, but has recently shifted to a ‘tip’ based model ‘Marking’ money

• The ways in which we ‘mark’ money are culturally significant negotiations of meaning, the exchange of money is never simply quantitative, it always has a signifying quality (see Viviana Zelizer) • For example, Mary Douglas suggested money can take on sacred qualities when used to amend the social status of another… • Contributors to campaigns therefore ‘mark’ their donations with supporting comments… ‘Marking’ money

‘Hi [BENEFICIARY], My name is [NAME] and I am 11 years old. Today I had a lemonade stand fundraiser for you and raised $125. I believe that you will get better and you are very brave and strong. There are so many people including me who are inspired by you. Keep up the hard work.’ ………………………………………………………………………………… ‘A gift from 7 year old, [NAME] from his First Communion funds. We have hope [B].’ ………………………………………………………………………………… ‘We are donating at the request of [NAME] in lieu of receiving birthday presents. Keep up the fight, [BENEFICIARY]!’ Resistance against profiting from the personal sacrifice of others ‘Hey "Go Fund Me" lets see you donate your 8% fee to him at the end of this fund raiser for this True American Hero !!!’ ………………………………………………………………………………… ‘I hope will waive their fees so this man gets everything donated to him. He deserves every penny’ ………………………………………………………………………………… ‘GOFUNDME should donate their 8% commission to [BENEFICIARY]! He is a real hero!’ ………………………………………………………………………………… ‘I just did the math and gofundme will make just over $20,000 off of the donations to this woman. I think it's beautiful for everyone to help but that is a lot of money and maybe we can petition for them to donate their fee to her medical bills.’ The just-in-time karma bank • GoFundMe: a ‘digital safety net’ and ‘part of the social fabric in many countries’ • GoFundMe: ‘… is designed to ensure success for just about anyone’ and is ‘the crowdfunding site for the rest of us’ • FundRazr: ‘crowd-insurance’, where users can draw from their ‘karma bank’ • YouCaring: ‘The secret prize for people who raise money on the site is they find out how much people care about them.’ • Crowdfunding is claimed to reduce ‘friction’ in our altruism, shifting ‘compassion into action’ and overcoming ‘spectatorish inertia’ (Baudrillard) • The promise of ‘radical transparency’, the appeal of knowing exactly where contributions are going • Crowdfunding platforms sold as on-demand, just-in-time service for converting social capital into liquid cash Silicon Valley Soteriology

Rob Solomon, CEO of GoFundMe on their platform as ‘doing what Silicon Valley can do and making the world a much better place’

Also emphasizing that a for-profit model is needed to produce best results: "Nobody's been able to really harness the power of the people to raise funds […] A for-profit in this space will perform better than a nonprofit. You need a modern Internet company to do that." (Rob Solomon, October 2016) Silicon Valley Soteriology

Dan Saper, YouCaring CEO: [Medical crowdfunding] ‘… is highly, highly scalable and has a ton of runway … The growth rate of the industry is showing that this can absolutely be an impactful safety net for a lot of individuals and communities to help each other.’ Silicon Valley Soteriology

‘When I looked at GoFundMe, I saw this global potential to do for the giving space what LinkedIn did for the jobs space, what Amazon has done for e- commerce, what Facebook and Twitter have done for communications, what Netflix has done for entertainment.’ (Rob Solomon, CEO GoFundMe, November 2017) Silicon Valley Soteriology

‘Often, funds people are raising are for a huge range of costs that go along with care, like travel to the place where you will get care, because insurance doesn't really cover that …[But] In the future, more fundraisers will likely seek to cover premiums and deductibles rather than the cost of care itself." ( Director Breanna DiGiammarino, 2017) If we were a non-profit …

‘GoFundMe has become the largest marketplace for causes, online. Our goal is to become the largest destination for giving in the world. If we were a non-profit or a foundation we would be the fourth or fifth largest non-profit in the world, and we would be the second largest foundation after the Bill and Melinda Gates Foundation.’

Rob Solomon (2016) Caring capitalism

• Rhetoric adopted by crowdfunding platforms reflects broader trends of ‘a new more caring version of the market where corporations pursue both money and vision’ (Barman, 2016) • Through ‘caring capitalism’ (Barman) prior divisions of ‘profit’ and ‘purpose’ are collapsed, no longer seen as ‘hostile worlds’ but rather complementary • Proponents of caring capitalism argue that ‘companies are equally effective, if not superior, to charity or government agencies in their ability to deliver needed social goods’ Does crisis crowdfunding work?

• Sometimes … but with worrying long-term implications … • Around 90% of campaigns fail to reach their funding targets. Median raise about 40% of target. Some raise no money at all (Berliner & Kenworthy, 2017) • Over-representation of crowdfunding in states that elected not to take up the Medicaid expansion (B & K, 2017) • However, medical expense crowdfunding may have reduced personal bankruptcy claims by around 4% (Burtch and Chan, 2016) • Just a substitution effect? Are we seeing the evacuation (or continuing absence) of state-based rights, replaced by civil society obligations, including self-advocacy of proving moral worthiness? Rationing healthcare through the crowd?

‘Medical crowdfunding should therefore be spurred on, whether through federal policy measures, direct government support in the form of subsidies, or simple endorsement and awareness- building campaigns’ (Burtch and Chan, 2016) On ‘constructing moral worthiness’: The New York Times ‘100 Neediest Cases’ 1912-1917*

*See Loseke, D.R. and Fawcett, K., 1995. Appealing appeals: Constructing moral worthiness, 1912–1917. The Sociological Quarterly, 36(1), pp.61-77 AND Loseke, D.R., 1997. ‘The Whole Spirit of Modern Philanthropy’: The Construction of the Idea of Charity, 1912-1992. Social Problems, 44(4), pp.425-444. On ‘constructing moral worthiness’: The New York Times ‘100 Neediest Cases’ 1912-1917

• The NYT ‘Neediest Cases’ played up its ‘educational’ purpose: who should we see as deserving of charity? How should charity be responsibly administered? • NYT 1912-1917: Each bio gave brief summary of desperate situation, with legitimacy confirmed by the authority of the paper itself – Crowdfunding Today: Perceived legitimacy a concern, requires more emotional labour and documentary evidence • NYT 1912-1917: In each biography, needs always packaged with also being worthy and deserving. To be ‘needy’ alone was not enough. – Crowdfunding Today: Importance of ‘worthiness’ amplified further by public comments from donors On ‘constructing moral worthiness’: The New York Times ‘100 Neediest Cases’ 1912-1917

• NYT 1912-1917: No blame apportioned to structural circumstances. Rather, just ‘bad luck’. – Crowdfunding Today: ‘Bad luck’ trope usually also present • NYT 1912-1917: Cases tended to conform to broadly conservative values: no vices, Fordist family model upheld, none willfully unemployed, but rather many victims of heroic labour – Crowdfunding Today: Similar conservative tropes emergent • NYT 1912-1917: Subjects framed as redeemable and resolute in determination to improve situation – Crowdfunding Today: Emphasized strongly, beneficiaries must display a therapeutics of positivity Primary difference in old v. New platform advocacy is in who must do the labour of sympathy seeking, with even greater expectations heaped upon marginalized persons

‘Wondering if you could give an update? It is always nice to see how the person you are donating money to is progressing.’ Consuming virtue… In early Neediest Cases (1912 to 1917) readers: ‘… gave money to the specific characters who were most appealing.’ (Loseke, 1995)

Yet readers were also paralyzed by choice: ‘in such an embarrassment of pathetic cases, it is difficult to select’ ‘… one is at a loss to determine which are the most needy’

• Hence, readers chose not according to need, but based on personal judgments of who was most morally worthy • Donors enjoyed selecting specific cases, enabling a consumerist approach to enter into practices of charity NYT Neediest Cases campaign now conducted through GoFundMe

What the implications of for-profit control of ‘empathy paths’? (Natalia Ruiz-Janco)

Is life grievable (Butler) only to the extent that its moral worth can be made visible, and hence virtuosic, instructive, and Crisis crowdfunding gives hope, but also ensures even pleasurable to that ‘no-one is permanently excluded from the game witness? (see also of entrepreneurship’ (Lois McNay) Isabell Lorey) Recommended labours of crowdfunding…

• Recruit help, ‘especially with your marketing efforts’

• ‘Set Up a Website: … First, it's important to set up a blog because it lends credibility and makes your cause more professional and authentic. It's best to start blogging 3-6 months in advance so that you start getting traction through Google and build a network...’

Sourced from Confined to Success, ‘How to raise money for medical expenses the right way’, https://confinedtosuccess.com/how-to-raise-money-for-medical-expenses/ Recommended labours of crowdfunding… • On establishing a campaign profile: ‘Provide as much detail as possible… Illustrate the consequences of not getting the money … Keep in mind that the public is wary of fraud so the more personal, heartfelt, and authentic you appear, the more trust you’ll gain and the more successful your campaign will be...’

• On asking for donations: … ‘ask close family and friends to make large donations of $100-$500 to set a precedent for future donors.’

Sourced from Confined to Success, ‘How to raise money for medical expenses the right way’, https://confinedtosuccess.com/how-to-raise-money-for-medical-expenses/ Recommended labours of crowdfunding…

• Networking: ‘Now's the time to tap into your network!... Start a spreadsheet to keep tabs on people you contact and track replies to your donation request.’

• ‘Follow-Up Regularly: You won't get much response if the only time you ask people to donate is when you first meet them. Persistence is key and that means asking 3 or 4 times at least!’ Recommended labours of crowdfunding…

• ‘Glumness won't win you fans so be sure to project hope, positivity, and enthusiasm even in the face of a serious situation.’

The expectation is not just of ‘resilience’, rather it is resplendence that is demanded Ready-made platforms of advocacy • Through positive precarization ‘citizen virtue becomes uncomplaining accommodation’, one that ‘morally fuses hyperbolic self-reliance with readiness to be sacrificed’ (Wendy Brown) • Governing through vulnerability that appears democratic, egalitarian, meritocratic, corrective, just etc. • ‘not just about the economization of social relations but also seen as a way of revivifying social solidarity’ (Lois McNay) • The platform is ready-to-hand and pre-configured, awaiting only the crowdfunder to fill it with (creative, emotional, confessional) labour • When subject has nothing to sell but their spirit, the market duly abides Sympathy biographies under platform capitalism • Crafting a ‘sympathy biography’ (Candace Clark) becomes a form of labour where the stakes may be life itself • Advocates and beneficiaries must embrace their roles as ‘sympathy entrepreneurs’, working out their ‘sympathy margins’ (Clark) and conscious of others ‘sympathy fatigue’ (Hochschild) • Subjects must abide the ‘Tyranny of Positive Energy’, where ‘citizens should not complain but instead “embody” solutions’ (Lovink and Rossiter) • These subjects become ‘spiritual bellhops’ (Elizabeth Spelman), through which we enter ‘the traffic in sorrow in grief’, consuming the ‘moral drama’ (Clark) of others, and determining which suffering which should command our attention • Vulnerable persons may not only remain stuck with their ailment, but can suffer the further injury of knowing a damning metric of their life’s worth • To achieve recognition requires efforts of ‘exemplification’ and perpetuates a ‘violence of normativity’ (Lauren Berlant) Appeals to reciprocity for service and vocation ‘[BENFICIARY] and [WIFE] are artists and musicians, serving part-time positions at [ORGANIZATION] and the [CHURCH MINISTRY] with their musical talents … [BENEFICIARY] and [WIFE] bring such great joy to so many lives through the sharing of their hearts and their gifts of music’ ……………………………………………………………………………… ‘[BENEFICIARY] is a loyal friend and a wonderful man that served his country as an United States Marine and now he needs our help.’ ……………………………………………………………………………… ‘[BENEFICIARY] and his wife [NAME] need your financial support as [B] will once again need to employ the willpower and determination he used to earn his trident and serve his country. “The only easy day was yesterday” is the Navy SEAL motto and will be [B's] as he works each and every day to gain back his strength…’ Appeal to recognize personal sacrifice

Woman injured by a dog in her care at a pet shelter:

‘[BENEFICIARY] is a wonderful human being, who spends her life, her energy, her money, her home, her car, everything in behalf of dog rescue. She is the President of [PET RESCUE], which, incidentally has helped rescue and home over 500 dogs in the last 3 years! She is the definition of a GIVER’

After complications suffered from liver donation:

‘[B's] Short Term Disability is about to run out. This was a selfless act of [B] to be a Live Liver Donor and a brave act for [WIFE] and the boys to be on board with the decision.’ Appeals to idealized life trajectories

‘Everything has been falling into place for [B]. He's got his girl, an exciting career, lives in a beautiful part of the country, many, many friends, and a huge family who loves him more than he probably knows.’ Appeals to courage, character, determination, hope etc. ‘Above all, [B] is truly a warrior! She is so brave and has been so tough, throughout all of this. Never once has she complained, looked for pity from anyone or said, "poor me."’ ……………………………………………………………………………… ‘Anyone that knows [B] knows she is optimistic, creative, strong, and funny - a perfect mix of character to help her get through what will undoubtedly be a tough and hard-fought journey.’ ……………………………………………………………………………… ‘However, anyone who knows [B] knows that she is a FIGHTER! Throughout all of this, [B] continues to have a positive attitude and keep her faith in God’ Appeals to small actions/big outcomes ie. ‘Every little bit helps!’ ‘Even the smallest contribution can make a big difference for [B] and the probabilities of succeeding on her new battle for life. We are all counting on your generosity.’ ………………………………………………………………………………………….. ‘[…] He will need many months of this treatment to make sure that every cancer cell is eliminated. I know that it is the holidays and money is tight for many but if you have the means to do so and can help us keep this life saving treatment going for [B], we would greatly appreciate it.’ ………………………………………………………………………………………….. ‘She still needs our help. Give up lunch for two days this week and donate the amount. […] realize it could have been you. Let's reach this goal. Let's do it for [B].’ Appeals to faith and higher power (working through donors) ‘We need an army of prayer warriors to make this miracle happen, only God can make this possible! We know he hears us, we see the results of his work from all your prayers daily and for that we are so grateful!’ ……………………………………………………………………………… ‘She's the Strongest Person I know!! She is a Fighter!! God favors her!! I'm going to continue to praise Him!! God is Good through it All. He has so much in store for us. I'm just waiting patiently. I'm showing you all [B] 's Journey, because she has a Testimony coming...Y'all get Ready!!’ Appeals amid the confession of suffering

‘His body is so weak right now and he is sad and scared. He knows that his body needs nutrition to heal, to be strong and fight this battle that he faces.’ ……………………………………………………………………………… ‘I have been doing okay, most days, but the difficult days are getting a little more, well, difficult.’ ……………………………………………………………………………… ‘I have been fighting depression and frustration more now than over my initial diagnosis. I have cut people out, ignored call, and not responded to texts...isolating myself. I am trying to find my strength, my ability to move forward with optimism, and my faith in my treatments.’ Appeals of grace and stoicism

Campaigners must carefully avoid ‘woe is me’ narratives while still articulating depth of suffering. A tricky balance is sought: ‘Besides not needing too much sympathy, one should not appear to want it too much. One should not demand sympathy or take it for granted. One certainly should not wallow in sympathy. Instead, one should underplay problems and count blessings.’ (Clark, 1997)

Example: “Candidly, it is important to me you know I have been living the life I have always wanted, even if my ‘Book of Life’ might have fewer chapters than others,” [B] noted. “I would never exchange it for anything in the world!” Appeal to prove the existence of the good

‘Let's prove to him that there is far more good in this world than the evil he experienced.’ …………………………………………………………………………………………… ‘In the darkness of today, YOU can be part of making tomorrow a better place. Please keep running by our side… Each contribution and message warms our hearts and fuels our fight!’ …………………………………………………………………………………………… ‘Events of the past few months have left many of us hurting and in need; Hurricanes, wildfires, the terrible shootings in Las Vegas. The best in us rises up in reaction to the worst of times. I’m asking any and all of you to rally around one of our own.’ Appeals to prideful reluctance

‘He doesn't want to be in the position where he needs to ask for help. Unfortunately, it's gotten to the point of him actually needing to do so in order to survive. I know it's a lot to ask for in this day and age; we all have our issues and problems. Trouble doesn't discriminate, as I'm sure we all know.’ ………………………………………………………………………………………… ‘I feel so bad asking for help, but any help would be most appreciated. Thank you.’ ………………………………………………………………………………………… ‘[B] has always been a very hardworking and independent person, so it is very difficult for her to even ask for anyone's help, but the illness and her desire to be there for her daughter has left her no choice.’ Appeals through (new) cultural capital • ‘This past Sunday, I met Eggnog the bulldog while working at the Disney Store, and her dad shared a little bit about [BENEFICIARY]. I was touched and heartbroken for [B] … For some reason, I searched for Eggnog on Google, found the instagram page and came here to find [B].’ (#39) • ‘Furiends of @Eggnog- Sending so much love from our family to yours!’ • ‘I'm a eggnog friend and I really wish with all my heart that you get • ‘We like so many found out about your story on Eggnog's IG page.’ • ‘We do not personally know you, but heard of [B’s] story through eggnog's bulldog page. Know that we will be continuously praying for you all and we have faith that [B] will be healed!’ Appeals through (new) cultural capital The use of crowdfunding as a proxy platform in advocacy for reproductive justice

@MattPWade Responses from the crowd

How does the crowd affirm the moral worthiness of the beneficiary and amplify the appeal?

Two very common methods of ‘marking’ donations: 1. Not marking it, de-signifying the donation by making it anonymous 2. Marking donations with universal supra-currency eg. ‘thoughts and prayers’

Other (less common) response types: Self-promotion: ‘From Metro Lock & Key, Inc. We pray this donation can unlock the health care that [BENEFICIARY] needs.’ ‘Paying it forward’: ‘I had an unexpected financial windfall (aka slot win at the casino). Happy to be able to share the good luck and positive vibes!!!!’ Undercutting sympathy or damage to pride: ‘Not a hand out a hand up.’ Sympathy siphoning Donating to another (more popular) campaign in order to try and attract attention to your own:

Example: ‘This money is some of the money from my gofundme if you search my name you will find it(not here to advertise) although u guys have gotten over 20x mine has.. but you guys seem to be going through a really tough time and from mine to yours I just want to help out like I said from my last donation even though it's not too much I know that it all adds up. Bless you guys you will be in my prayers’ Research trajectories and current knowledge gaps

Research project has explored two general directions so far: – Developing theories of positive precarization – neoliberal subjectivities, governmentality, responsibilization etc. during times of austerity and inequality – Narrative constructions of moral worthiness under positive precarization (via content analysis of 120 crowdfunding campaigns) Research trajectories and current knowledge gaps Current missing mass between these two trajectories (positive precarization theory and actual narratives of moral worthiness) are specifics on inequalities of funding outcomes – What subjects are less able to participate in this style of self- presentation? – Who receives support, under what circumstances, and for what specific health conditions? – How might this affect knowledge production in the health sciences, given that an emerging practice is patients crowdfunding their own clinical trials? More pressing questions…

• Do crowdfunding platforms reproduce explicit or implicit biases of recognition, exacerbating already existing inequalities? (but hidden by observations biases, because we don’t see failed campaigns, only successful ones?) • What about the missing masses who elect not to attempt a crowdfunding campaign? Why do they avoid the public platform? • Why have existing studies sidestepped around questions of race, ethnicity, age, and socioeconomic status? ‘… would have relied heavily on (likely inaccurate) assumptions made by the researchers based off of photos and textual evidence, [and so] we decided not to collect or report these indicators.’ (Berliner and Kenworthy, 2017) Race-based biases within contexts of generosity and gift-giving • In door-to-door charity fundraising study, those in a minority group were ‘considerably less likely to obtain a contribution, and conditional on securing a contribution, gift size is lower than their majority counterparts receive’ (List and Price, 2008) • Contribution patterns on micro-lending platform reveal strong preferences for culturally similar and geographically closer borrowers (Burtch et al. 2014) • Study of 110,000 campaigns on lending platform Prosper observed that Black Americans were about 30% less likely to see ventures funded than White compatriots (Pope and Sydnor, 2011) Questions of method + expanding or contracting circles of empathy?

• Rhue and Clark (2016) analyzed projects, concluding that ‘projects with Black fundraisers or subjects in project photos face significantly lower success rates’ – primary tool of analysis involved analyzing 193,000 campaigns using Face++ facial recognition technology, from which categorizations of race were based on pictures included with campaigns

Questions of method + expanding or contracting circles of empathy?

• Findings align with broader trends around persistent racial biases on other digital platforms, particularly those within new sharing economies (Daniels, 2013) (eg. see ‘AirBnB while black’ literature) • Digital platforms began with sincere utopian hopes of expanding our circles of empathy, but troubling possibilities they may actually be contracting • Urgent study needed on distribution of disease burden, and subsequent chances of success in crowdfunding for specific conditions • Widely agreed that chronic conditions do not fare as well on crowdfunding platforms, but affect minorities in much higher proportions • Are we inviting blind spots in the provisioning of support, particularly for conditions that disproportionately affect minority or marginalized groups? • New ways of reimagining sociality through crowdfunding may simply become part of already existing forms of everyday discrimination • Making each actor their own individual enterprise in hyper-competitive settings invites ‘cumulative disadvantages’ for those lacking particular forms of human capital • Also needed are more cross-cultural comparisons of personal crisis crowdfunding Algorithmic power

• More analysis of ‘protological power’ (Lovink and Rossiter, 2018) in crowdfunding needed, particularly the role algorithms play in preferencing certain campaigns over others • Moral hazards abound; what appeals are made more visible, and what is silently shuffled into obscurity? • Is ‘negative surveillance’ (Bauman) employed, where certain campaigns are rendered less likely to be stumbled upon? • Pressing need to force protocols into the open for greater scrutiny, making decision architectures more accountable Conclusion (1) • The conceit of crowdfunding is in looking like resistance while actually abiding causes of suffering • This is achieved by undertaking ‘a massive work of trans- coding while remaining in sight of the lexicon on which it draws’ (Stuart Hall) • Through this transcoding, what was once the indignity of begging instead becomes bootstrap virtuosity • Through this transcoding, the state has not shirked its duties, but rather empowers citizens to do more • Through this transcoding, ‘freedom and compulsion coincide’ in forms of ‘auto-exploitation’ (Han, 2015) • Through this transcoding, liberal democratic protections are replaced with voting with one’s disposable income Conclusion (2) • The pooling of risk is redistributed, with even greater burdens falling on those at the bottom • Through this transcoding, reactive and temporary coalitions act only on the symptoms of precarity • The provision of welfare is further given over to private enterprise, and ‘the politics of recognition remains caught in a self-cancelling dynamic that dissipates its potential radical content’ (Lois McNay) • Through this transcoding, recognition is shifted into competitive spheres • Through this transcoding, prejudices threaten to be further entrenched, only now in positivized forms which may prove far harder to undo. • Statecraft that exploits the art of being pure of heart? Some early touchstones and guiding research questions… Undoing the Demos Wendy Brown Is medical crowdfunding part of the entrepreneurialization of all facets of life, undermining more collective freedoms through the insistence on individual freedom? Some early touchstones and guiding research questions… State of Insecurity Isabell Lorey How must we labour to become ‘grievable’, and where the only way to navigate ‘precarization’ is through practices of ‘virtuosity’? Some early touchstones and guiding research questions… Strangers in their Own Land Arlie Russell Hochschild

Why do many find the virtuosity of crowdfunding appealing? Is it the desire to know that the fruit of one’s labour is given to those who are seen as morally deserving? Some early touchstones and guiding research questions… Family Values Melinda Cooper Do we forget that, from early ‘Poor Laws’ to neoliberal reforms of the 1980s, there has always been an insistence on the family as the first and ideally only safety net? Is medical expense crowdfunding therefore a neoliberal and neoconservative dream, unburdening the state of responsibilities, but still affirming values we are expected to uphold? Some early touchstones and guiding research questions… Platform Capitalism Nick Srnicek How have online social network platforms enrolled themselves into practices of virtuosity? How do these platforms capture ‘empathy paths’, and then extract revenue from them? On ‘empathy paths’, see Ruiz‐Junco, N., 2017. Advancing the Sociology of Empathy: A Proposal. Symbolic Interaction Some early touchstones and guiding research questions… Economic Lives Viviana Zelizer How has the economic valuation of human life been negotiated against sacred prohibitions? Alternatively, is medical crowdfunding, by enabling donors to send not just money, but also ‘thoughts and prayers, a curious sacralizing of the monetary value of life? Some early touchstones and guiding research questions… A Consumers’ Republic Lizabeth Cohen Has the US typically seen itself as a ‘consumers’ republic’? One where national identity, prosperity, and democratic agency are fundamentally entwined with mass consumption, choice, and the valorization of the consumer? Is there a broad consensus among lay subjects that the most could good one can do is through what one chooses to consume, rather than any other spheres of political agency? The case of Russell Cruzan

Charlie Gard (UK) Russell Cruzan (US) The case of Russell Cruzan

Glenn Beck (on his radio programme): • ‘Stop a Charlie Gard from happening in America!’ • Charlie Gard was a victim of ‘socialized medicine’ • Claims opportunity to show the distinctive qualities of American citizenship and moral character The case of Russell Cruzan

A selection of responses from donors on the Cruzan crowdfunding webpage:

‘Get Bubby better and raise him to know his survival stands as an example to the world of the right way to do things. The American Way. We are with you. God Bless.’ [email protected] @MattPWade The case of Russell Cruzan

‘America is great...because Americans are good! It's our responsibility to be good.’

[email protected] @MattPWade The case of Russell Cruzan ‘Who can put a price on that smiling infants life?’

‘How could you do what the healthcare system did to Charlie Gard? [Are] We going to run the clock out on this child too?’

[email protected] @MattPWade The case of Russell Cruzan

‘We must do, so that Government won’t’

Is this DIY, niche, or bespoke populism? Or even illiberal democracy?

[email protected] @MattPWade Platform capitalism = ‘Personal Society 2.0’?

‘What's irritated me about the whole direction of politics in the last 30 years is that it's always been towards the collectivist society. People have forgotten about the personal society. And they say: do I count, do I matter? To which the short answer is, yes … And therefore, it isn't that I set out on economic policies; it's that I set out really to change the approach, and changing the economics is the means of changing that approach. If you change the approach you really are after the heart and soul of the nation. Economics are the method; the object is to change the heart and soul.’ (Thatcher) Crowdfunding platforms, reproductive justice, and labours for recognition and grievability

Dr Matt Wade, ANU @MattPWade These slides + more available at mattwade.net/work Australia’s Global Gag • Howard Government introduced gag order, in effect from 1996-2009, in order to secure Senator Harradine’s support for privatization of Telstra (Harradine was also key to ministerial veto of RU486 by Abbott) • Maternal mortality rate in PNG rose 56% during this period (Aus Reproductive Health Alliance, 2009) Senator Brian Harradine @MattPWade (1935-2014) 75

‘No, it isn’t a prediction […] There are too many variables and unforeseen possibilities. Let’s say it’s an anti- prediction: If this future can be described in detail, maybe it won’t happen. But such wishful thinking cannot be depended on either.’ Margaret Atwood

@MattPWade 77 78 Outline • The rise of crowdfunding during times of personal crisis • The reproductive justice movement – Reproductive justice on crowdfunding platforms – Crowdfunding abortion (both medical and surgical) – Crowdfunding maternity leave – The Crowdpac campaign against Brett Kavanaugh • Conclusion

@MattPWade 79 The Reproductive Justice Movement Reproductive justice is: ‘(1) the right not to have a child; (2) the right to have a child; and (3) the right to parent children in safe and healthy environments.’ And requires ‘ … access to specific, community-based resources including high-quality health care, housing and education, a living wage, a healthy environment, and a safety net for times when these resources fail. Safe and dignified fertility management, childbirth, and parenting are impossible without these resources.’ (Loretta Ross and Rickie Solinger) @MattPWade 80 The Reproductive Justice Movement Is the ‘right’ you cannot exercise simply another form of injury, misrecognition, ungrievability, cruel optimism? The steady erosion of reproductive rights in the US: - Hyde Amendment (1977), prohibited use of Federal funding to subsidize abortion - Casey ruling (1992) expanded states’ rights to impose more regulatory hurdles (e.g. waiting periods, more requirements for informed consent) - TRAP Laws (Target Regulation of Abortion Providers) - Global gag orders @MattPWade 81 Reproductive justice in Australia

Adrianne Walter, Human Rights Law Centre 82 ‘Your role requires you to represent Cricket Australia in the best possible manner to government and government agencies. The tweets you have sent are fundamentally inconsistent with this requirement.’ 83 Empathy, grievability, virtuosity • What the implications of for-profit control over ‘empathy paths’? (Natalia Ruiz-Janco) • Is life grievable (Butler) only to the extent that its moral worth can be made visible, virtuosic, instructive, and even pleasurable to witness? (see also Isabell Lorey) • Crisis crowdfunding gives hope, but also ensures that ‘no-one is permanently excluded from the game of entrepreneurship’ (Lois McNay)

@MattPWade 84 Crowdfunding and blocking empathy paths • In 2013, Shakina Nayfack sought to raise funds on YouCaring for top surgery • YouCaring spokesman described Nayfack’s campaign as ‘disturbing’, stating ‘Obviously, we never intended for our site to be used for causes such as this, but if an individual is sincere and abides by our terms of service we wish them the best.’ • YouCaring initially had a Christian/missionary focus, acquired by GoFundMe in 2018 @MattPWade 85 Crowdfunding access to abortion: The case of Bailey on GoFundMe

@MattPWade 86

The case of Bailey on GoFundMe ‘[We’ve had] Threads of 200 or 400 comments that are really hateful, or violent, or threatening. I’ve had a few people threaten to dox me, log my IP address, and find out where I live [so they can] come hurt me in some way, or come hurt Lüci [her partner]. There have definitely been moments where we’ve been like, Holy fuck. Really? Really?’ (‘Bailey’ in Farah, 2014)

@MattPWade 88 The case of Bailey on GoFundMe • Email to Bailey from GFM Rep: ‘your campaign contains subject matter that GoFundMe would rather not be associated with.’ • GoFundMe then banned any campaign ‘directly funding an abortion’ from 2014-16 • GFM pointed to their overall aim ‘to protect our brand from certain materials and subject matter whose proponents span the political spectrum. For example, GoFundMe may not be used to fund an abortion or to purchase firearms’.

@MattPWade 89 Study of crowdfunding abortion • 60 campaigns in sample, qualitative analysis still in progress • Avg. amount requested $1076 • Only 8 out of 60 met funding target • Avg. amount raised $198 BUT median is $5 (i.e. most campaigns raise close to nothing)

@MattPWade 90 Financial difficulties ‘Where I live, the cost of an abortion by pill - the cheapest option - is over $500. Living on a $9/hr wage, I cannot remotely afford this. My direct family is unable to provide help, and my in-laws DO NOT support abortion under any circumstance […] I have tried doing research into every available financial assistance, including insurance. Nothing has worked. Please donate anything you can so that I am not forced to carry a baby that I am unable to love and take care of.’

@MattPWade 91 Pre-emptive strategies/pleas to avoid crowd moralizing ‘We are not looking for judgement or other options. This is the best option for her situation. We ask your respect for her during this difficult time, as this was not an easy decision for her or anyone to make.’ ………………………………………………………………. ‘I understand abortion is against the way of God, but the pain this has brought to my entire family is more than bearable.’

@MattPWade 92 Mental health struggles ‘Basically my nausea got so extreme along with depression of going thru with an abortion during the height of the ban controversy, every post a reminder of my own current state of being. The extreme stigmatization and isolation of being pregnant and knowing you're going to have an abortion and not having anyone to talk to ate me up completely and along with my mental illness I became incredibly depressed and suicidal. Not to mention the earliest appointment was June 13th which meant I would spend (am spending) 3 entire weeks being pregnant with a fetus I am not carrying to term. Feeling like my body is not my own. Feeling hated by every person I saw online or in my family who supported the abortion bans.’

@MattPWade 93 Health risks in carrying to term

‘On May 24th I found out I was pregnant in the ER. I also found out I have a bilateral uterus and that my endometriosis along with other factors made it a very high risk pregnancy as well as a higher risk for an ectopic pregnancy.’

@MattPWade 94 Intersectional compounding of harm ‘My name is Z, im a 24yr old trans man. I am 4 weeks pregnant from a decision i didnt get to make. I have $200 but am still a little short. Not only am i transgender I am a recovering heroin addict(over 4 months clean) and am mentally ill with bipolar /bpd and panick dissorder. Having a child right now would ruin my life. I am not ready let alone ever wanting to give birth or be pregnant. Please help, i dont think i would live through pregnancy and i dont have enough money for this, nor do i have private insurance. Even a dollar will help. Thank you.’ @MattPWade 95 Experiences of abuse, violence, abandonment

@MattPWade 96 Structural/logistical impediments ‘I have been freaking out trying to get resources on abortion. Of course all the abortion bans are happening right now too. I have 2 weeks to be able to get an abortion in my state. The clinic is 4 hours away and my first check from my new job will not cover the cost of it. They also require you to pay up front and the price will go up every week. I am so stressed.’

@MattPWade 97 Isolation and vulnerability

‘I'm on my own in every sense of the word. There's no one I can call for help, no one I can rely on to help or protect me when shit hits the fan. I've been struggling to remove myself from fucked up situations, and have been recently making progress, but this is a huge setback.’

@MattPWade 98 Reluctance and ambivalence, but out of options

‘I am currently in a spot where asking for outside help is a very difficult thing to do, but I am out of options.’ ………………………………………………………………. ‘I genuinely have always hated asking for help but I figure I need to at least try so I don't drown in debt and possibly become homeless again.’

@MattPWade 99 Urgency ‘After going to Planned Parenthood today, prepared yet anxious for the procedure, and only having $300, I was told payment plans aren't accepted as well as when you're 16 weeks, the price goes up to $970. […] I recently started a new job, but I am urged not to wait, as well as by the time I get paid (which still will not be enough to cover the procedure) it will be waiting until 18 weeks. Which the price then goes up from the original $970, to $1500. I honestly had no idea it worked like this.’ @MattPWade 100 Sidewalk counselling/crowd harassment ‘Please strongly consider other options. Don't let anyone tell you that you cannot be a mother because us women are strong and capable of anything, especially childbirth!’ ………………………………………………………………….. ‘Your baby is already alive and well. Please choose Adoption instead. Worse yet would be to live with the death of a child.’ ………………………………………………………………….. ‘Mothers should die for their children, not the other way around. Please watch this video…’ @MattPWade 101 Support, solidarity, sympathy, empathy, affirmation ‘Love to you my darling! That was an incredibly wonderful post you made, and I'm so happy that so many people were able to help!’ ………………………………………………………………… ‘I have been in a similar situation and thankfully had some good people supporting me during the hard times. I wish I could donate more ♥’ …………………………………………………………………….. ‘I am donating because a woman's body belongs to her alone and this fundamental right is under threat in the US’

@MattPWade 102 @MattPWade 103 Study of crowdfunding maternity leave • Increasingly common in US, a new ritual of gift- giving • 60 campaigns in sample, qualitative analysis still in progress – Avg. amount requested is $4397 – Only 10 of 60 reach funding target, BUT – Avg. amount raised $2111, median $1965

@MattPWade 104 What are typical campaign images for abortion and maternity leave? Termination Maternity Leave

early sonogram Family photo and/or pregnancy test (as evidentiary display) later ultrasound

A single portrait/selfie Photo of mother photo of woman and child, after giving birth

@MattPWade Please note: Not actual images from campaigns 105 Old and new rituals of gift-giving ‘This summer, and coinciding with our twentieth wedding anniversary, we found out we are expecting baby number four, a welcome surprise and our first girl! In lieu of baby gifts, we are asking for contributions toward my maternity leave fund....WHATEVER YOU CAN AFFORD HELPS! We want to give our baby the gift of mom at home.’

106 Old and new rituals of gift-giving ‘Anything helps. We’ll be presenting [Beneficiary] with this gift at our family baby shower at the end of the month.’ ………………………………………………………… ‘Today a coworker donated 40 hours of their own leave, so I’m going to attribute this as an offline donation toward my goal.’

107 108 Structural impediments ‘Currently my employer does provide maternity leave, however it is unpaid. Originally I planned to save up my tax refund to cover the costs of my time off. During a previous pregnancy, I unexpectedly gave birth at a military hospital (where I work), resulting in a dispute between my insurance company and the DoD hospital. While the case is being settled, my tax refund was withheld (SNATCHED), from me. At this point I will not be able to recover the $7,000 that was expected to cover us during my maternity leave. Instead it has been applied to cover the hospital costs until this matter is settled.’

109 The denied ‘bliss’ of normative role ideals ‘The money we are trying to raise would cover our rent for the month and free up enough that we can survive. We don't need to live comfortably. We just need to get through until I am well enough to return to work. I've wanted to be a mother for as long as I can remember. I've been hearing for years that I was born to be a mother and I can't believe this is really happening. Every kick brings me more joy that words can express. But, I also feels a terrible sadness, knowing that my worries about money are overriding my ability to bask in the bliss of motherhood.’ 110 Activist anti-prediction? Connecting personal troubles to public issues ‘We know that compulsory paid maternity leave has recently taken a forefront in the public eye and that many of you are passionate about seeing change on a systemic level. In the meantime, what if we were to rally around one another in times of need, achieving together what we could never do apart?’

111 Activist anti-prediction? Connecting personal troubles to public issues ‘A mom who owns a bakery told me she had her baby and was back into the kitchen with a newborn within a week. It was a choice between the closure of her business or business as usual. We should not have to choose between motherhood and ownership. I have tried really hard to save money to help with my transition and buy some time, but it is almost impossible to save with the rising cost of rent, paying employees, insurance, and unexpected costs. The city is not supporting my motherhood journey, so I am asking you to be my village and donate to my gofundme.’ 112 ‘The US lags behind other countries in maternity leave coverage, especially burdening self-employed moms. Paid maternity leave for all hard-working moms should be a HUMAN RIGHT. This not a feminist issue or a partisan cause of the Democratic party. It is a human rights issue. Government-sponsored maternity leave for hard-working contributors to our workforce is not welfare; it is a country's way of valuing hard-working families, mothers, and babies, babies who will positively contribute to our country's economy in future years. It is no wonder that abortion rates are so high in the US; the economic burden of a having a baby here and taking time off to establish a healthy start for that baby is HUGE, if not impossible for the working and middle class. Women often feel like there is no choice but to abort’. 113 Susan Collins CrowdPac campaign Campaign Aim: In the event that Senator Susan Collins fails to vote against nomination of Brett Kavanaugh to Supreme Court, all donations will be given to Collins’ direct opponent for the 2020 election campaign Approx. 1500 donation comments to be analysed

@MattPWade 114 Comments on Collins campaign • ‘She has no courage when it comes to Trump and his ilk. She should have voted AGAINST Kavanaugh. We'll have that idiot on the bench at SCOTUS for decades, thanks to her.’ • ‘I endorse Susan Collins' opponent because she cares more about her senate seat and the Republican Party than she cares about women, regardless of their political party.’ • ‘I was deeply saddened to see Susan Collins sell out women of this country in support of powerful men.’

@MattPWade 115 • ‘How could you? What could possibly mean more to you than the honor of standing alongside women who have survived sexual abuse and trauma? Oh right - your selfish political needs. What a sad little coward you turned out to be.’ • ‘I am absolutely disgusted with Susan Collins. I believe Dr. Ford 100%. Shame on you Susan Collins. You have betrayed women everywhere.’ • ‘Susan Collins is a let down for all women everywhere. I had to explain to my 17 year old daughter why Susan Collins didn't believe a 15 year old sexual assault victim. I support a future opponent who will be the voice for young women, not betray them.’ • ‘Susan Collins has proved she is no ally for women when it Dr Christine Blasey really counts, but will sell us out for political/financial gain. Ford Campaign in support of Planned Parenthood and ACLU, publicly supported by GoFundMe 117 Conclusion • Early findings, work in progress • Full slide deck (plus extras) available at mattwade.net/work • Get in touch at [email protected]

@MattPWade 118