In May, as India grappled with a second wave of the coronavirus pandemic, Mahan and Nishan Sekhon found themselves stretched thin. Their mother had contracted black fungus, a potentially lethal disease. The treatment, at a cost of $1,300 per day, had exhausted their insurance plan and burned through their savings. As a last resort, they turned to Ketto, a crowdfunding platform.
They shared the campaign within their social networks in mid-June, and within a month the brothers had secured $59,000 of their $76,000 goal. “I even got a call from an [Indian man] in Belgium,” Mahan Sekhon told Rest of World. “His Spanish restaurant manager told him [about the fundraiser].”
This is how Ketto is supposed to work. In a country where out-of-pocket expenses account for nearly 63% of total health expenditures, crowdfunding fills a void in medical needs for thousands of Indians. During the Covid-19 crisis, in which more than 4 million people are estimated to have died and 10 million people have lost their jobs, Ketto saw a fourfold increase in registered fundraisers, hosting nearly 12,500 Covid-19 relief campaigns and raising $40 million, according to the company.
However, for many people in India, crowdfunding medical care is either impractical or impossible. To access the platforms, users need official documentation and formal bank accounts, which are far from universal. In 2018, the World Bank’s Identification for Development initiative estimated that 162 million Indians lack registration, including people from the trans community, homeless people, sex workers, indigenous peoples, and those from oppressed caste and class backgrounds. Even when they can get on the platforms, they are regularly targeted with hate speech and discrimination.
It means they are, effectively, cut off from services they need, or are forced to rely on the empathy of intermediaries. “People from marginalized communities in India often do not possess identity documents,” lawyer and activist Lara Jesani told Rest of World. “There are sections of people who systematically face the problem of documentation,” she said.
Ketto was founded in 2012 as an online marketplace that allows people to raise funds for everything from starting a business to helping nonprofits. The company began to focus on healthcare three years ago, Varun Sheth, the company’s co-founder, told Rest of World. “We realized that [medical fundraising] was where the platform was most effectively used,” he said. The company promotes campaigns through targeted advertising on Facebook and YouTube, helping them to reach a wide audience, including Indian citizens overseas. “We constantly got feedback that people outside India, especially, want to support more causes in India,” Sheth said.
Since its launch, Ketto said it has hosted over 200,000 medical fundraisers and raised over $148 million. The platform recently raised its largest ever medical appeal, $460,000 for Mithra, an infant with spinal muscular atrophy.
To set up an independent fundraiser on Ketto, an individual needs government identification, a bank account, and internet access. The company has to collect this information, since KYC or “know your customer” guidelines are mandated by the Reserve Bank of India, in an effort to prevent money laundering.
Even these basic conditions are harder to fulfill than they might seem. Almost 38% of Indian children under the age of five don’t have a birth certificate — a document that in later life is crucial in applying for other forms of government identification, including the Permanent Account Number (PAN) card, which is issued to tax-paying Indian citizens. According to the World Economic Forum, although Indians with internet access have doubled in number since 2010, 50% of India’s population are still not online. Similarly, although 80% of Indians have bank accounts, nearly 38% of these are inactive. Without these, individuals — and in particular, marginalized people — who need out-of-pocket medical care are dependent on hospitals, non-government organizations, or kind strangers to raise funds on their behalf.
In June, Rishikesh Raut, a Pune-based non-binary trans person, stepped in to help a friend in Silchar, in the northeastern state of Assam, who was trying to raise funds for sex workers and tea plantation employees who had contracted Covid-19. These groups are often undocumented. According to the only existing statistics — from 2009 — just 20% of sex workers in Delhi, India’s capital, possessed voter identification cards.
“My friend is a social activist from a small town — [people there] are not socially educated with regards to [accessing] crowdfunding websites,” Raut, 22, told Rest of World. “They don’t have a lot of contacts and access to people in [the same way] I have access.”
Raut set up a Ketto fundraiser using their own bank account, and within a month, they were able to raise enough funds to help 65 people with their recovery by providing them with nutritious, home-cooked meals.
Ketto is aware of the obstacles. The company helps people coming onto the platform apply for identification if they don’t have documents or a bank account, Sheth said, and also allows users to withdraw funds directly into a hospital or NGO bank account. He said that Ketto’s goal is to partner with 800 hospitals across India in the next two years. He said that PAN cards could be issued in 48 hours, and that “most people” in India had bank accounts.
Access isn’t the only way that minorities are penalized on crowdfunding sites, however.
Raut also set up a fundraiser for themself, requesting $9,380 for gender-affirming surgery and accompanying psychotherapy. “I’m somebody who doesn’t feel comfortable taking anybody’s money,” they said. “After a lot of back and forth, I [was] okay with putting myself out there.”
Days after their fundraiser went live, however, they found themself being trolled on social media on account of their identity as an oppressed-caste, trans non-binary person. “At first, I just deleted these comments because there were eight or ten of them,” said Raut. Raut stopped fundraising around the same time, on account of the second wave of Covid-19. When they resumed their fundraising, the transphobic comments intensified. “A lot of people told me that fundraising [for gender-affirming surgery] was a ‘luxurious’ thing, and I shouldn’t be asking for money,” said Raut.
Raut said their biggest concern was that the fundraiser would be reported for fraud by trolls insisting that their surgery was a choice. “I was scared that all of the money would be refunded,” they said.
Ketto reassured Raut that the company was aware of the potential for transphobia in their case, and told them that in the event of a user complaint, they would place the fundraiser on hold while they investigated.
Other gender-marginalized people who fundraised on Milaap, a competing crowdfunding platform, also reported facing similar harassment. They believe that although these platforms encourage a diverse range of fundraisers, their advertising campaigns don’t, at present, express solidarity with the queer community, or surface their causes. “We see ads on social media about raising funds for [people] who can’t afford treatment,” explained Siddharth Gope, an oppressed-caste trans man who faced social media abuse after his Milaap fundraiser went live. “Ads encourage people to take action,” said Gope, adding, “showing ads of gender affirmation surgeries can be a highly effective way to gather funds for surgeries and protect trans lives.”
A Milaap spokesperson said that the company’s role in curbing online hate speech is “confined only to its platform,” and that it tries to remove hate speech and discrimination by removing abusive content. The spokesperson also said that Milaap allows users to run private fundraisers that are not displayed on the main platform or listed on search engines.
Ketto’s Sheth said that while, in principle, his company wants to run a platform that helps “all kinds of causes,” there is room for him to “go back and think about how [they] can help.”
The risk of trolling amplifies the issues around identity. Some minority groups are hesitant about identifying themselves, making it even harder for them to access fundraising sites.
In June, Mallika Jhaveri, an Indore-based strategy consultant, was approached by a non-binary friend who was trying to raise money to leave an abusive home. Jhaveri set up a Milaap fundraiser, but soon after it went live, it was flagged by their verification team, who asked why the beneficiary was anonymous. After a week of back-and-forth with Milaap, during which time the campaign was paused, the fundraiser was finally allowed to proceed.
“Most times, beneficiaries aren’t okay with [sharing their identity],” Jhaveri said. “Otherwise they would have put up a post by themselves on Milaap.”
Milaap’s spokesperson said that they understand the need for anonymity, but that strict KYC guidelines mean they need to see documentation establishing the relationship between the person running a campaign and the eventual beneficiary.
In the end, Jhaveri used her own social media accounts to raise the money. She said she believes that the fundraising platforms work well in many circumstances, but that they need to be more aware of the challenges faced by marginalized communities — who have to balance convenience with their safety and wellbeing.
For a person facing abuse from their own family, documentation may be hard to come by, and demands for paperwork and evidence can be traumatic. “If someone is asking for proof, it’s not always the easiest, and it’s also triggering,” Jhaveri said. “We need to have people on platforms like these to be understanding and compassionate of [that] fact.”