Travis Loteck grew up doing tricks on his BMX bike with the kids around his neighborhood. He would jump up and down dirt hills in a wooded area near his house in Millville, New Jersey until late at night. When not riding, he ran track, played varsity football, and, for a short period in high school, was a cheerleader.
BMX was a way to stay out of trouble in a city surrounded by prisons. When BMX was not sufficient to keep Travis out of trouble, his friend’s mother taught him how to cook. Travis discovered the simple pleasures of being in the kitchen as he made chicken cordon bleu. He was a child at the time when Iron Chef and many other cooking shows were growing in popularity. The chefs were cool, suave, and tough. By the age of 18, Travis knew he wanted to be just like them. He took up the first job he could get, a cook at a casino. The day after his high school graduation, Travis, and his best friend at the time, were already working.
He was soon taken under the wing of a senior chef, John, within his first few months on the job, who taught him all he knew. Travis would show up to work at 7 AM sharp to learn from John, from techniques on plating to navigating the overwhelming stress of working in a kitchen. His shift officially began at 9 AM and lasted over eight hours. Travis started as a prep cook, chopping and serving salads, and worked his way up to sous-chef.
He loved the controlled chaos. “There’s just so much going on, and when you’re behind the line, all you see is the tickets, stacks of tickets in front of you,” Travis tells me. At times it seemed like the orders would overwhelm him. “There’ll be 50 tickets up and then I’ll have another set of 50 laying down…But no matter what happens you know you will get through it.”
Travis enjoyed the blazing stoves, the many cooks bustling about, and the stress that came with feeding thousands of people. He had always felt that he had control over his life. Whether it was chaotic dinner rushes or work mishaps, every problem could be resolved with hard work.
Chefs do their work on their feet, and Travis stood for a minimum of 80 hours a week in his heyday as a sous-chef. Travis’s career was defined by perseverance. He needed to withstand the stress, muscle through long shifts, and get out orders with speed.
It was in his 20s, as his career as a chef was taking off, that he began to notice bruising and pain in his right leg. The pain got to a point where the only solution was highly invasive surgeries. Like many Americans, Travis was left with medical bills he could not pay. And, like many Americans, Travis was forced to figure it out on his own.
Travis is one of many individuals who have resorted to a GoFundMe campaign to help finance medical bills and the many ancillary costs that come with falling ill in America. His campaign had small bursts of success when it first launched, but the support and shares diminished, dwindled, and eventually died.
Crowdfunding sites have become a place of last recourse. The most popular crowdfunding site for personal campaigns, GoFundMe, promises to “turn compassion into action.” Individuals from virtually anywhere in the world can create a campaign at no cost and raise funds for ideas, needs, and wants. That’s the theory, anyway. Reality doesn’t always bear it out.
But, How did this Multimillion Industry Come to be?
Crowdfunding itself isn’t a new concept and has been historically used as a way to fund creative projects and, in times of economic hardship, even people. During the Great Migration, thousands of African American men and women utilized crowdfunding as a way to pay for rent. African Americans moving from the rural south to the urban north and midwest, encountered rampant racism and economic discrimination, forcing many to pay higher rent. The excessive rent prices gave rise to community-organized fundraisers to pay for rent and utilities – rent parties.
The premise was simple. People would pay an entrance fee, and the hosts would supply the food and drink. The leftover money went toward rent. Rent Parties became a popular way for poor people to supplement their income and afford bare necessities. In an article in the Journal of Open Innovation, donation crowdfunding is defined as a group of common individuals coming together online to finance a single goal, creating financing channels powered by a community of people.
The 2008 Great Recession gave rise to similar financing channels except, with the power of the internet, the model became more sleek and efficient. The ability to connect with hundreds of thousands of people around the world redefined the scope and scale of fundraising. The early stages of online crowdfunding were mainly driven by sites like Kickstarter and Indiegogo. These sites were used by entrepreneurs in desperate need of seed money. The business and tech world was flooded with how-to pieces and conferences on the best ways to finance your big ideas– from swanky watches to E-bikes.
Crowdfunding sites became popular because their websites made it possible to enter your credit card in seconds and start donating to causes you believed in. People could then share the causes they supported on their social media. Donation efforts were no longer limited to a church or school, but the entire country and even the entire world could participate.
GoFundMe was launched in 2010, and opened its platform “for any need or dream.” The company applies a fundraising model that focuses on donation-based crowdfunding where campaigns can keep what they raise. With GoFundMe, you shopped for a cause that suited your good-faith feelings and donated directly to them. You knew your money was going exactly where you wanted it to. When a good samaritan donates to well-established non-profits the money is understood to be going to needy families in your local neighborhood, starving children in underdeveloped countries, or endangered animals. However, little is known of how the money is spent, and unless you have time to scour through 30-page budgets, you would remain ignorant. GoFundMe offered transparency and hope, making it a popular hub for everyday philanthropists.
However, the ability to raise money for almost anything has led GoFundme, like most tech companies, to face an onslaught of sticky ethical questions that were never considered. For example, a fundraiser for Kyle Rittenhouse, charged with killing two men and injuring another, was removed for violating (unspecified) terms of service. The campaign titled, “Freedom Convoy 2022,” raising funds for Canadian truck drivers protesting vaccines was shut down and had the $7.9 million funds already raised withheld. The company cited police reports of violence as a violation of its guidelines. GoFundMe’s terms and conditions change and lengthen as they grapple with the new ways their platform is used. Personal crowdfunding remains its main function with medical crowdfunding being one of the most popular uses.
Now, GoFundMe attempts to distance itself from being viewed as a form of assistance. The company’s terms and service reiterate the feeling, “We are not a Broker, Financial Institution, Creditor, or Charity.” As a result, in a 2021 press release, after GoFundMe was flooded with campaigns during the pandemic, Cadogen stated, “[GoFundMe] was never meant to be a source of support for basic needs, and it can never be a replacement for robust federal COVID-19 relief.”
But, for a company that claims to be nothing other than a money transferring site, their branding says otherwise. GoFundMe’s homepage displays adorable smiling children, who have been helped and at times saved by viral fundraisers, and cheesy one-liners, creating a feeling of hope.
“A place for friends. A place for charities. A place for dreamers. A place for you.”
GoFundMe might not have known the role it would play in American lives, but they have leaned into it. The site inspires hope, and is now a hub for the desperate and needy, allowing people to raise funds for personal issues ranging from fixing an old car to funding your child’s medical expenses.
Eliza O’Neil was like any other child, a 4-year-old girl with shiny, blonde hair and bright brown eyes, born into the loving family of Glenn and Cara and their child Beckham. Her story changed the landscape of crowdfunding. In 2013, Eliza was diagnosed with Sanfilippo Syndrome, a rare metabolic disorder that affects the brain, leading to delayed development and an eventual decline in learning ability. Sanfilippo Syndrome is aggressive, and the O’Neils were racing against time to find a treatment for their daughter for a disease that was thought untreatable.
The O’Neil family launched their first campaign on GoFundMe in 2014, titled “Saving Eliza.” The goal of the campaign was to fund a clinical trial with the hopes of creating a treatment that could extend and improve young Eliza’s life. The campaign went viral and became the first GoFundMe fundraiser to raise over $1 million. The campaign’s success gave hope to other Americans who needed to fund high medical costs.
In a four-minute video, uploaded to YouTube and embedded on their campaign page, the world met Eliza. The video showed a little girl playing soccer, running in a park towards her parents, and playing with her brother– doing things that within months to a year she would lose the ability to do. The family made regular updates on their page, making donors aware of Eliza’s needs. Eliza won the hearts of many and messages flooded their crowdfunding site with get-well wishes, heartfelt prayers for her recovery, and recognition of the family’s bravery and perseverance. After over a year, the fundraiser closed with over $2 million and 37.2K donations.
By 2018, thanks to the power of crowdfunding, Eliza celebrated her second year receiving the clinical trial, helping slow the progress of her disease. She was a success story, one that GoFundMe claims as a major milestone in the growth of their company. However, Eliza’s success is not easily replicated, and has only been done a handful of times and never with a $2 million payout.
Eliza is now 12 years old, the family has since created the Cure Sanfilippo Syndrome Foundation, and every birthday she celebrates the family launches a campaign to raise money for their foundation. The second campaign created in 2017 by the O’Neils raised over $2.1 million out of the $3 million they had sought to raise. Eliza set the tone for the role GoFundMe would play in Americans’ lives– a Hail Mary.
According to Statista, a data-collecting website, as of 2020, in North America alone, crowdfunding sites have raised over $74 billion in donations. In an article published in the Journal of Social Science and Medicine, in 2015, out of over $34 billion in contributions raised on crowdfunding sites, about 20% of those campaigns support social causes– the leading use for crowdfunding applications, with GoFundMe hosting the bulk of them.
By 2015, GoFundMe had hosted over 1.8 million medical crowdfunding campaigns. To expand GoFundMe’s charitable outreach, in January 2017, the site acquired CrowdRise, a competing fundraising site. CrowdRise was a for-profit company focused on charity event crowdfunding, and its acquisition allowed GoFundMe to profit from CrowdRise’s expertise. CrowdRise would handle large-scale campaigns such as charities and major causes and GoFundMe handled personal causes.
By November 2017, GoFundMe had no platform fees for organizers, meaning organizers (those launching a campaign) did not have to pay a fee to set up their campaign. Instead, the site applied the voluntary tip model allowing donors to tip GoFundMe a set amount separate from their donation. The tipping model allowed for transparency and ensured donors the money donated would go directly to the campaign of their choice, at the same time, GoFundMe secured extra funding to keep the site running. However, GoFundMe still earns a percentage for every donation roughly 5% for each donation processed, and a 2.9% credit processing fee.
“Our focus is very simple,” said Cadogen in an interview with Protocol Magazine. “It’s like: What can we do quickly that can help provide a conduit for others to help? And then let’s move heaven and earth.” Sites like GoFundMe have optimized donors’ experience by creating donation categories, you can shop for a cause ranging from one-time emergency expenses to medical, education, and community needs. The all-encompassing range of categories has become a reflection of society’s needs.
While crowdfunding is open to all, it doesn’t work for everyone. Eliza’s campaign demonstrated that crowdfunding success expects a lot from campaigners. Successful campaigns demand a modicum of tech-savvy, the skill to write a coherent story, and the ability to gather funds requires a social network with means sufficient to give. Even if all criteria are met the financial goal specified may remain light-years away.
The modern touch of crowdfunding sites has redefined the reach and impact social causes may have. But, this new reality begs the question: can it make a difference?
Not all Fundraisers are made Equal
Mark Igra, a sociology graduate student at the University of Washington, in his thesis, “Donor Financial Capacity Drives Racial Inequality in Medical Crowdsourced Funding,” shows the success of crowdfunding is dependent on a campaigner’s social network, and the wealth within the networks
A person’s network is the collection of people and resources a person has access to, however, Igra highlights that when used to access information, or in this case collect money, the networks can either help or hinder existing inequalities. Crowdfunding can then reproduce racial inequalities because most campaigns launched by Black Americans and Hispanic people originate from geographic areas and social networks that are lower-income.
Over a Zoom interview, Igra clarified that crowdfunding has helped many people but it has also exacerbated many existing inequalities by helping some more than others. “The bigger issue is that when we rely on [crowdfunding] to solve problems, it just doesn’t solve them equally,” he said. “So people who are better connected will already have a chance of better resilience in the face of a natural disaster.”
Igra saw this play out during the Colorado wildfires, in early January, that left many victims displaced. An acquaintance of Igra had donated to help someone whose house burned in Colorado. “The person had owned an expensive house to start with and was connected to this person because their children had gone to private school together…” said Igra. “And so he gave. But he was not giving to the neediest person in the wake of that actual disaster.”
In crowdfunding, the concept of “homophily” becomes more important. Homophily is the tendency for people to associate and connect with those similar to themselves. You and your friends will have more in common with each other and likely originate from similar economic backgrounds. A corporate lawyer will not have an overlapping social network with a blue-collar worker. If both the well-to-do lawyer and the blue-collar worker launched their campaigns and shared them on their social media accounts, they would lead to unequal returns. The lawyer’s network is likely made up of well-to-do lawyers, friends from law school, friends from undergraduate, and family members. The blue-collar worker likely has friends in similar fields, friends from high school, possibly friends from undergraduate, and family members. The wealth within these networks will be different. Family and friends will be supportive but the driver of inequality will be how much, or little, each friend and family member can give.
A fruitful campaign, according to Igra, will originate from a “large network” of numerous potential donors with abundant “financial capacity” meaning, people with an income or wealth sufficient to donate. The “mobilization” of the donors, in other words, is the campaign shared and donated to. The idea of a network becomes even more complex when we consider how our networks are built.
Igra’s research shows that network access is driven by your first-degree online and offline connections and how many times your campaign is shared by those in your network. The size of your first-degree network will shape who will eventually see your campaign. The number of people who see your campaign will increase with the number of times others share it. But, what makes people want to share?
“Two abstract factors might cause a potential donor to share the campaign,” recounts Igra in his thesis. “First, the stronger the social tie between the potential donor and the beneficiary, the more likely donors are to share the campaign. Second, a sense that the beneficiary is ‘deserving’ of aid will mobilize potential donors to take action on the beneficiary’s behalf.” These factors are then affected by the question of money, how much do you have, how much can you give, and how much are you willing to donate?
People are prompted to help those they feel connected to. A person close to the beneficiary might simply donate and share to help a person they care about. But, in distant relationship ties, such as the friend of a friend, there is not an emotional attachment that prompts a person to donate. In this case, the idea of deservingness becomes more valuable. Deservingness contributes to racial inequality in crowdfunding because, as researchers point out, there are racialized impressions of what is considered deserving. For example, opposition to welfare programs has long stemmed from the idea that Black and Hispanic communities are mostly the recipients of these benefits and are undeserving of them.
In his study, Igra found that the median campaign for a Black or Hispanic beneficiary received three times the number of donations from donors of the same race and ethnicity. The effects of this are compounded when considering that Black beneficiaries are more likely to live in low-income areas, limiting the funds available to them. Years of systemic racism have limited and prevented the acquisition of wealth for many Black Americans, making it likely for them to live in low-income areas.
Their social network is made up of people with similar financial backgrounds as themselves, affecting their ability to fundraise successfully. “…A White man in Seattle who requested $15,000 would be expected to raise $7,591, whereas a Black man from the same zip code would receive $4,891 and a Hispanic man $4,756,” Igra writes. He found that 49% of campaigns for White and Asian recipients received at least one donation of $1,000, while only 36% of Black or Hispanic beneficiaries received a similar sum.
These inequalities are rarely overcome by the possibility of campaigns going viral. “Even if you got all of your friends to share at once, that just doesn’t count as viral,” explained Igra. “That’s just not a big enough pool to reach people that are that much different from you,…Each of those people is more socially distant from you and may not feel a connection and be less likely to donate.”
Viral campaigns are rare. Many campaigns will reach their end after being seen by most of a person’s social network. As an example, Igra’s research finds that campaigns from lower-income donor pools are shared more than campaigns with higher donor pools. Despite the increased shares, campaigns in lower-income pools will see little to no success. People with bountiful social networks will thrive and those without will fail, allowing for crowdfunding sites to replicate real-world inequalities.
The Crowdfunding Experience for Most Americans
Travis exemplifies the experience of most uninsured and low-income Americans on GoFundMe. Travis’ symptoms began in 2007 when he was 22. He had bruises on his right leg, and it felt like his muscles were always on the verge of cramping. A short doctor visit in New Jersey (wrongly) diagnosed a pulled muscle.
Travis at the time had decided to go on a cross-country road trip with a group of friends in an old RV. They drove from New Jersey to Florida stopping along the way to ride their bikes. The bruises and pain did not stop but worsened over time.
When they arrived in Austin, Texas, Travis headed to the hospital for an ultrasound. It revealed a blood clot moving inside the veins of Travis’ right leg. His doctors prescribed blood thinners, priced at roughly $550 for a month’s worth. At the time, the medication was covered by his insurance, so the exorbitant price tag was not concerning. “They didn’t think it was gonna be a permanent thing,” said Travis. “Then it became a permanent thing.”
His initial diagnosis, superficial thrombophlebitis became deep vein thrombosis, meaning his already bad leg had grown worse. Without a known cause for his illness, his right leg would continue to worsen over the years. Travis visited over 50 doctors and underwent genetic testing to figure out the cause of his condition. They found no answers. By 2019, Travis couldn’t walk. He went from Texas to New Jersey and then back to Texas in search of a doctor willing to operate on his leg. After months of appointments and referrals, Travis met a young doctor in Austin willing to help.
The doctor was confident he could perform the surgery but couldn’t guarantee Travis would walk again. “I’ll work on you.” the doctor told Travis. “But you could lose your leg.” What choice did he have? He could no longer stand on his right leg for longer than a few minutes, and it had been weeks since he stepped foot in a kitchen. If successful, it would give Travis another 5 to 10 years with his leg. He’d eventually have to have it amputated, but would at least have a few more years to prepare for it.
The surgery took two and a half hours. The operation was successful and Travis was able to walk again. Travis’s health insurance paid for his medications, doctor visits, and surgery. As soon as he was discharged, he found a job at the Fairmont Hotel as a chef. Travis was himself again.
A year later, the surgery began to fail. As if matters could not get worse, his left leg began “locking up” and cramping– the same way his right leg had. In October 2020, Travis’ right leg was amputated, and he spent three weeks at the hospital recuperating. A friend, who knew of Travis’s economic situation, created his first GoFundMe to pay for his bills, living expenses, and out-of-pocket cost for medication. Travis and his friend wanted to gather just enough to give Travis time to heal before he would have to go back to work. They set the sum to something achievable– $5,000.
After a little over a month, the campaign gathered over $6,600. Travis felt grateful. The campaign was a success, but the money left significantly faster than it came. Travis needed more and continued campaigning, sharing it on his Instagram and Facebook accounts. The campaign circulated through his small network of friends, but once people stopped sharing it, the donations stopped.
As Igra’s research showed, Travis’ first network connections were small in number and poor in wealth. Travis’s GoFundMe when first uploaded was viewed by his few close friends, who then donated small amounts of money and shared it on their social networks. Travis’s largest donation was $1,000, from a collection made at the Fairmont. The second-largest donation was $500. The rest ranged from $10-50. But, Travis’ circle of friends could only donate so much and few strangers and distant acquaintances were moved to donate.
Despite active campaigning in the form of close-up shots of his “gnarly” amputation, as Travis described it, and descriptive posts on how he would spend the money, Travis’ first GoFundMe ended with 93 donations. Travis’s circle was made up of people like him, short on funds, and not well connected.
Travis at the time even shared his campaign on Facebook groups focused on helping people gather funds for medical and emergency expenses. His post was flooded with people accusing him of faking his injuries. They said he was lazy, and a scammer.
Travis wonders whether his appearance made it difficult for him to be taken seriously. He has tattoos, wide gauges in his ears, and long, light brown dreads frame his face. Matters only became worse after losing his insurance. “No one explained to me, really the side effects of losing your leg,” said Travis as he pets his meowing cat.
Despite having a prosthetic, walking for longer than a few minutes at a time was unbearable. Travis’ residual limb had a broken bone and the cut itself was ill-suited for a prosthetic, leading him to experience pinching and stabbing pains when walking. In June 2021, doctors dug into his right leg once more to reshape it, resulting in yet another hefty and unpayable medical bill nearing hundreds of thousands of dollars. After his leg was reshaped the prosthetic, designed for the first amputation, no longer fit and now remains unused.
He didn’t know what to do. He’d heard of chefs with similar disabilities, like one with no hands, who had continued their careers. “There are ways to get around it. I just haven’t figured out mentally how to get back into the kitchen,” he said.
On December 23, 2021, he created a second GoFundMe titled, “Help with my new life as an amputee,” the goal was set to $35,000. Travis learned from his first experience of fundraising and decided to ask for more. Prosthetics were expensive, and life with a chronic disease while uninsured was even more so.
This time around the donations ranged from $5-300 with a single $1,000 donation. Help came in waves and occasionally stopped altogether for several weeks and at times months. He reached the usual people, most of whom have already donated to his first campaign. Support is dwindling, and it has become difficult to rally a crowd when the situation appears hopeless with no end in sight.
The campaign has come to a stop with $7,253. Travis remains appreciative, and he celebrates the small victories. But, his medication needs to be refilled, and he needs to pay for rent and utilities. Travis hasn’t given up and finds ways to ameliorate his situation. He reached out to old clients and now meal preps for the few that still live in Texas, and he applies for remote work. The most pressing concern is health insurance. He applied to Medicaid, a state and federal program that provides health insurance for low-income individuals.
While in New Jersey, he qualified for Medicaid and believed since his situation had considerably worsened he might qualify in Texas. Travis was wrong. Despite his unemployment status, small income, and little to no savings, he was denied Medicaid benefits in Texas.
With 18.4% of Texans uninsured (double the national average), Texas is the number one state in both the highest number and percentage of uninsured US residents. Texas is also one of a handful of states that have refused to expand Medicaid coverage and efforts to do so are met with Republican resistance.
Since I last spoke with Travis, GoFundMe donations have all but stopped. He has applied for disability benefits and has been refused twice. His medical expenses remain high and so does his medical debt. He sold his Xbox, his laptop (making applying to jobs more difficult), his beloved chef knives, his television, and miscellaneous items in his apartment to afford his medicine and pay his bills. He still cooks and sells his meals to friends, but those opportunities are rare.
His only remaining option is to wait for the call from the lawyer who will hopefully accept his case and help him acquire disability benefits. For a man known for “pushing through” and “rolling with the punches” spirits are becoming low.
“Pretty much everything short of begging on the street right now is where I’m at. I haven’t had to beg on the street too much, so that’s good,” said Travis as he rolled around in his wheelchair showing me his sparse belongings. “But, if it gets that bad… I have to do what I have to do.”
What makes a Winner
As Igra’s research shows, success is heavily dependent on the wealth within your social network. With a small network of friends deficient in wealth, Travis was likely to fail. However, many of Travis’ characteristics alongside the way he presented his fundraiser contributed to its unsuccessful end.
The making of a winner goes further than a person’s circumstance. It touches on who we are and how we present ourselves. A person’s age, race, and deservingness can hinder or help their chances at success.
Igra’s research demonstrates that, in the case of age, donors are more prompted to donate when the recipient is a child. We naturally perceive children as innocents who are victims of circumstance – nothing a child does makes them deserving of their current medical status. Conversely, campaigns with older recipients receive significantly fewer donations. Specific age groups, such as the elderly, are most affected.
Race plays an important role because of stereotypes that associate one’s race with a propensity to receive and apply to welfare programs. Donors may abide by these stigmas and believe that certain recipients are “lazy” and undeserving of aid. This hinders Black and Hispanic people from campaigning successfully.
Some of the most successful campaigns attempt to prove their worthiness in different ways: Recipients may establish that they have exhausted all other avenues such as working overtime, using all of their savings, or maxing out credit cards. In cases where the campaign is created by a family member, friend, or stranger, the creator of the campaign will stress the good nature of the recipient, their resilience, and their kindness to others. Campaign creators might even reiterate the recipient’s positive attitude in the face of catastrophe.
The perceived tone of a person’s GoFundMe page affects how well the campaign will perform. Campaigns, where readers perceive the recipient as defeated, upset, or self-pitying, will not perform well. Campaigns with hopeful tones motivate viewers to donate. The fundraisers where potential donors feel like an important part of the recipient’s fight against illness prove highly successful.
Health care coverage remains low at 34.8%, according to the 2020 US Census Data, making crowdfunding a highly competitive environment where campaigners vie for the American public’s attention. Crowdfunding plays on Americans’ optimism and democratic ideals– everyone has an equal chance.
The United States’ idea of “picking yourself up by the bootstraps” and rampant individualism persist within donors, softened only by the country’s bent towards altruism. Secretly, donors want to be a hero, a good man in a storm, and with crowdfunding, you no longer have to actively go out and do something, simply type in your credit card number. Instant gratification.
Because these ideas remain strong, donors enter campaign pages with the question– what makes you worthy of my time and money? From the comfort of their homes, people can pick the winners. The winners become those the populace deems most deserving. The losers are those the public often forgets, the undeserving, who leave GoFundMe empty-handed.
The Other Side of GoFundMe: Meet the Matteys
Dave Mattey is from Rochester, New York, and grew up in a happy and supportive family. A man with many talents from the creative to the conventional, he went to Virginia Tech where he graduated as an engineer. After securing a comfortable job, he became bored of his field.
At the time, his cousin, John, was living in Manhattan, trying to make it as an actor. Dave visited him frequently and began to fiddle with the idea of leaving his comfy, yet boring, job and becoming an actor. Soon enough, Dave signed up for an improvisation class at night in Manhattan. He would leave his work in Connecticut every week and drive to his class. Dave was funny and likable and upon hearing the first laughs at one of his skits, he made acting his side gig. Dave went from booking small jobs to slowly bigger roles.
Cristina was from Galveston, Texas, her parents were reformed hippies. Her dad gave up his career as a jazz musician and her parents exchanged their VW bus for stability. Her father became a dental technician and her mother sold Tupperware.
At 37, her mother was diagnosed with skin cancer, and her father worked tirelessly to afford her treatments. Their life became consumed by finding ways to pay for hefty health insurance premiums. As their medical expenses grew, Cristina’s parents lost their home and were forced to start over in Wisconsin, where Cristina, eventually, went to university. After years of medical expenses, Cristina’s parents had been left with no savings to help her with college. She was forced to pay her tuition fees and living expenses through work-study and financial aid, and upon graduation, Cristina became an actress.
Years later, coming from opposite sides of the country, Cristina and Dave met at Universal Studios in California when, as Cristina says, both were “young and in great shape.” Dave, who is 6’10, played the character named Tiny at a live show called Waterworld. The show included speed boats, jet skis, guns, and explosions. Cristina played an evil overlord in James Cameron’s adaptation of Terminator 3. A co-worker who worked on both of their shows introduced them.
Cristina was Dave’s opposite. Where he was tall and appeared domineering, she was slight and cheerful. Their temperaments, however, were equal in their kindness and optimism. “When I met him, I was 38. He was 36,” said Cristina. “I’m a cougar.” They clicked. By Christmas time they were dating, and a year later in the summer of 2007, they were happily married.
Cristina Mattey’s smiling face peered at me from behind red wide cat-eye-shaped frames. She greeted me and animatedly began to tell me their story. Dave went on to play Bigfoot over five different times in different movies and shows. He’s done television shows like Wizards of Waverly Place, iCarly, and Henry Danger among others.
“He also went to the Royal Shakespeare Company, but comedy is his forte,” said Cristina. “And he’s a member of Mensa. He’s very much a renaissance man.” She gave a halfhearted smile as she began to describe the series of struggles she had faced when his health began to decline.
Dave’s last stunt job, The Book of Boba Fett, a show on Disney Plus, was in December 2020. After filming he began to feel ill. The stunt job was like any other, strenuous, but not as much as ones in the past. The stunt required the hero to climb on Dave’s neck and cut off his head– defeating the monster.
“He was pretty sore,” said Cristina. “And then instead of getting better several days later, and feeling better, he just felt worse and worse every day.” The Mattey’s quickly ruled out COVID-19 after testing. The pain which had begun as soreness became muscle pain that spanned from his head to the rest of his body. Dave started to tell Cristina, “I didn’t realize how much work my shoulders were doing, keeping my giant arms attached to my body.”
The physical then became neurological. Dave began having double vision, which later became a triple vision in each eye, making it so that Dave saw six of everything. At the time, Dave was working on the special effects for a movie, a job which later became impossible as his vision began to worsen. Working on his computer left him with blinding headaches, and Dave was in too much physical pain to continue his work as a stunt actor.
Dave was hired for a good job with a reputable director soon after he had fallen ill. The Mattey’s considered the job but the more they ran through the logistics, the less feasible the job became. Dave later confided in Cristina and said, “I can’t do it. I can’t even get to set, let alone stand around all day.” Dave’s career as a stuntman officially ended that day.
In the past year, Dave has had over 112 blood tests, 5 MRIs, 2 CT scans, 2 nerve conduction tests, and biopsies of the stomach, small intestine, bone, fat, and muscle. After countless doctor visits, his diagnosis is presumed to be amyloidosis, a rare disease that causes a buildup of amyloid proteins in the organs; however, nothing is certain yet and Dave remains without a diagnosis.
Dave’s pain has worsened and become constant. He is now unable to stand for more than 30 seconds at a time before he starts to sweat from the overwhelming pain as his muscles give in. He spends his days bedridden. Doctor’s appointments entail a complex and tiring game of Tetris as Cristina attempts to fit Dave in their small car. Regular vehicles don’t easily accommodate his massive height, and Cristina, who is 5’6 and slight, is responsible for transporting Dave from appointment to appointment.
The Mattey’s big ask– a motorized wheelchair and a wheelchair van. Dave weighs around 400 pounds and is unable to fit in most conventional wheelchairs. He requires a custom-made motorized wheelchair. Their request was quickly denied by health insurance. The top-of-the-line wheelchair, the only wheelchair able to support Dave, seemed excessive. Plus, without an official diagnosis, health insurance providers could not understand why he simply can’t walk.
Problems with health insurance were not unknown to Cristina and even reminded her of an old joke she’d heard from a friend. “In London, they couldn’t make the show Breaking Bad,” said Cristina laughing. “Because the story would be: school teacher gets terminal stage four cancer. Get treated. The end.” Cristina reflected that no one would have to open a meth lab, and government-provided health insurance would simply kick in.
It was then that Cristina knew she could no longer do it alone. An old friend of hers from high school, Adam Nadelson, created her GoFundMe campaign after much insisting. Cristina’s hesitance– there were people out there that likely needed more help than her. However, as Dave’s condition worsened and health insurance was no closer to providing a wheelchair, Cristina caved.
“I feel like he deserves a break. Things shouldn’t have to be so hard and his responsibilities haven’t gone away. He’s still the head of the household. But now it’s so hard for him to even walk from room to room,” said Cristina. “…I want to let Dave’s friends know that he needs something now. And look at what they did. They rallied.”
They launched the campaign on January 20, 2022, and titled it: ‘Help Big Dave fight his BIG problem.’ Cristina had written Dave’s story on GoFundMe, which read more like a love letter to her husband than a plea for help. She had emphasized his kindness to others and herself.
“…he’s always been there when someone had a need – from quietly doing unpaid gigs for the USC film students, to helping people move, to providing computer and IT support for seemingly everyone.” she wrote. “When my father developed vascular dementia and could no longer work, my parents lost everything,…Big Dave was right there for us…”
Dave had helped Cristina’s father secure health insurance. He took over the role of caretaker and tended to her father when he developed vascular dementia. He had also stayed by Cristina’s side and cared for her throughout two bouts of cancer, juggling multiple jobs. Cristina included it all. Her GoFundMe became a call to action for the community to give back to a man who had always been there for others.
Despite Dave’s prolonged illness, the Mattey’s campaign had a clear finish line in sight– a wheelchair and wheelchair van. The struggle– an insurance company continuously rejecting their request for a motorized wheelchair. Their struggles with insurance inspired empathy in their expansive social network. The goal inspired confidence because it was within grasp. All the Mattey’s needed to alleviate their struggles was kindness.
Within the week Dave’s campaign had raised over $50,000. Friends, old and new, colleagues, fellow actors, and family quickly donated to and shared the campaign. It garnered just as much support and sympathy from strangers, some would even reach out to Cristina to ask how they could help. Their comment section on GoFundMe was filled with wishes for a speedy recovery, prayers, and kind words affirming and applauding Dave’s good nature.
“Had the honor of working with Big Dave and only his heart is bigger than his presence” – Hymnson Chan commented on GoFundMe. The campaign was a success, and The Matteys became part of the small group of winners.
Is Crowdfunding a Working System, or a Symptom of a Broken one?
GoFundMe is a $600 million, for-profit company, which receives a cut for every campaign, whether for sickly children, needy single moms, or natural disasters. But are crowdfunding sites like GoFundMe a problem, or a symptom of it? And the problem is that Americans don’t have adequate health insurance.
In her paper, “Medical Crowdfunding and Disparities in Health Care Access in the United States, 2016-2020,” Dr. Nora Kenworthy, a medical anthropologist at the University of Washington, found that medical crowdfunding is portrayed as a safety net, especially in states with low health insurance coverage and high out of pocket costs. The result is that many people use crowdfunding to pay medical bills, or access life-saving medication, as Travis did. Kenworthy shows that the growth of the charitable crowdfunding industry was a direct response to the increase in government austerity, economic precarity, and high healthcare costs. Un- and under-insured people used crowdfunding to fill in the gaps in their healthcare plans.
For example, Dave’s health insurance covered the hundreds of thousands of dollars of medical exams, but not the wheelchair and van that increased Dave’s quality of life. For Travis, health insurance, for the time he had it, covered necessary surgeries but didn’t cover the income he missed from spending weeks in the hospital. Eventually, his inability to work meant he lost his insurance. The Mattey’s got their wheelchair, but are still saving for a van. Cristina hopes Dave’s residual checks from past films will be enough to give them one more year of health insurance. After that, she doesn’t know what they’ll do. Travis bought a tent in late February, to prepare for the moment when his landlord evicts him.
In America, healthcare is tied to employment, and the 2020 Census reported that 54% of people receive health insurance through their employer. Lose your job, and you lose your health insurance. Getting sick without health insurance drives many Americans into bankruptcy. Over 66% of all bankruptcies are tied to medical issues with a majority of people citing loss of income due to illness as a reason. Until America finds a way to provide universal health insurance, crowdfunding sites like GoFundMe will continue to fill the gap.