@raeleemaycarpenter holding book, @kimberly_kaye, and @kimmirhoades on blue to green vertical gradient background Passionfruit Remix

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Content creation can be a lifeline for disabled creators—but it can also put their mental and physical health at risk

'...If I don’t make content, I lose subscribers, period. Losing subscribers means lost income.'

 

Sara Watkins

Internet Culture

Posted on Oct 4, 2022   Updated on Oct 5, 2022, 3:08 pm CDT

Can you imagine if your life depended on creating content? For the average employed and able-bodied person, social media is a helpful tool, a source of income, and a way to connect with others. For disabled people, it’s all these things and more. In some cases, it’s literally a lifesaving resource. Disabled people are turning to the internet for access to basic needs, like mobility aids, accessibility measures, and even limbs.

As with any kind of content creation, disabled creators take many different routes— funny videos, informative Reels, and so on. But in a digital world of able-bodied people, disabled people are increasingly burdened with having to stand out. If you’re too disabled, no one wants to watch your videos. If you’re not disabled enough, no one wants to donate to your cause. Disabled creators have to walk a fine line between palatable, relevant, and pitiable. 

Kimberly Kaye (@kimberley_kaye), a content creator on Instagram and Twitter with a following of about 12,000, received over $100,000 in GoFundMe donations toward her medical expenses, and even that wasn’t nearly enough to cover the costs. 

“Between HBOT chamber treatment to help with internal bleeding in my bladder and intestines, organ failure, travel, boarding at Cleveland Clinic, out-of-pocket testing and medicine costs my insurance refused to pay, plus specialist copays, it cost about $200,000 out-of-pocket across 28 months…. none of which was tax deductible,” Kaye told Passionfruit. “It financially ruined me, and it destroyed my marriage—my ex-husband and I are still affected daily by what my organ failure/illness 6 years ago did to our finances and credit.” 

In recovery now, Kaye spends 20 to 30 hours per week creating content—on top of her 30 hour per week job—to make ends meet. 

“It doesn’t matter if I’m in a flare, if I have to have a colonoscopy that week, or if I had an anaphylactic event… if I don’t make content, I lose subscribers, period. Losing subscribers means lost income. Lost income means the rent doesn’t get paid, or I can’t afford my medication. I’m frequently putting the capitalist need to make content for money before my physical and mental health,” she said.

It’s not as simple as saying that this is a problem localized to the U.S., the U.K., or any specific geographic area. Disability funding and support is notoriously underfunded across the world despite 15% of the world’s population identifying as disabled. The nuances of making money as a disabled person tend to vary by location and diagnosis— it’s impossible to speak to them all— but the general idea is that it’s hard to make money when you’re disabled. 

For example, in America, people with qualifying disabilities who can’t work or perform “substantial gainful activities” (SGA) can request government assistance by filing a disability case. If approved, they receive a monthly stipend called Social Security Disability Income (SSDI) of about $800 to $1,200 a month on average. However,  it can take years before your case is heard, let alone accepted or rejected, and you need to meet the SGA criteria of making less than $1,350 a month to even start the process of applying. If you’re lucky enough to be approved, the SSDI stipend borders on the national poverty level, which is well below the cost of living in most states. 

The application process itself is expensive because people applying for SSDI are still responsible for doctors appointments; travel; medications; and daily living expenses, and showing a history of these expenses is critical to explaining why you need the stipend in the first place. In other words, to apply for SSDI, you need to pay for costly medical bills and make $16,000 or less per year—and that doesn’t guarantee when or if you’ll receive aid.

Novelist and content creator Raelee Mae Carpenter (@raeleemaecarpenter), who has a budding following of about 5,000, has been waiting three years for their disability hearing. 

“My situation really isn’t sustainable, and I’m scared,” they said. “I’ve tried having dozens of other jobs, but I’ve found that no employer is willing to accommodate all of my disabilities.”

So where does this leave disabled people like Carpenter and Kaye who can’t afford to stop working, who are waiting for their case to be heard, or who can’t make ends meet with only social security disability insurance (SSDI)?

It leads them online, becoming creators. In an effort to access basic health needs and improve their quality of life while working within their physical limitations, many disabled individuals rely on content creation. In this way, the profession is a double-edged sword. It encourages people who struggle to work a standard 40-hour work week to commit to the 24/7 content creation cycle. At its worst, the content creation cycle can make disabled people feel that they have to “perform” or compete against each other to make a living or access crucial quality of life measures. At its best, there’s still a lot of pressure to make specific kinds of content in order to perform well and be successful.

“I feel pressured to make algorithm-friendly content that won’t get shadow banned, even when algorithm-friendly content often is NOT what patients need,” said Kaye, whose content typically focuses on educational resources for the chronically ill.

Even when successful in monetizing their following, most disabled content creators are working against the income limits of SGA and SSDI (or their country’s equivalent). On top of that, most brands don’t partner with disabled creators which further impacts their income potential; disabled people have been historically underrepresented in media and the workforce because many disabilities are seen as unpleasant or unmarketable.

“I don’t really see many disabled influencers who have corporate sponsorships. In an ableist society, a disabled life isn’t the idealized existence that most people want to see,” Carpenter said. “Even the disabled people I see on Twitter who have large followings and high engagement are often open about the fact that they live in poverty due to low disability payments or otherwise very modest income. It doesn’t seem like the world provides disabled people with good options for living above the poverty line, let alone offsetting the ‘crip tax’ (the costs of special diets, homecare, various aids, etc., that make being disabled more expensive than being abled). To be honest, it’s scary for me to see so many disabled people struggle so hard. I’m very concerned for my future.”

Most people who watch disabled content creators are disabled, too, which means creators are inherently marketing toward a population that disproportionately lives in poverty compared to their able-bodied, same-age counterparts. It’s a difficult balance of creating content that somehow marries what the algorithm deems appropriate, what well-paid people like enough to support, and what patients who need disability-specific content can actually benefit from.

“I see these crowdfunding stories on #DisabilityTwitter all the time,” Carpenter said. “People are raising money for homecare, rent, food, medications. It’s sad and very scary that people have to crowdfund for such basic necessities, either because the wait for disability benefits is so long or because it just doesn’t pay enough to cover basic bills. If I am not approved for disability after my upcoming hearing, I could very well end up trying to crowdfund for myself.”

Even if they’re extremely successful, disabled content creators are still capped on how much they can make per month while retaining their SSDI. Assuming they’re receiving average SSDI and maxing out their SGA by continuing to work, disabled people make about $20,000 to $28,000 annually. Without SGA, like content creation, that number is back to $16,000 per year or less. 

And so, content creation becomes a necessary source of income. Sure, online communities like Twitter, TikTok, and Instagram help disabled people to raise awareness (#NothingAboutUsWithoutUs, #OwnVoices) and access critical care through crowdfunding, but the cost is higher than it appears. Social media encourages disabled individuals to distill very real experiences into bite-sized half-truths to stay relevant or palatable. It can even pit members of the disability community against each other as they compete for support or worse—sound the horn for ableist trolls. 

“Having to create content around something that has been traumatic in my life, and that is still traumatic in my life, is a balancing act,” Kaye says. “I don’t think able-bodied or ‘well’ people understand how much trolls, incels, and bigots love tormenting disabled creators. There are even influencers, like Tracey Egan Morrisey of the old Jezebel, who have Reels and podcast episodes devoted to ‘exposing fakers’ or accusing disabled people of having ‘Munchausen’s Syndrome’—something you don’t encounter until you’re putting yourself and your content out there. The abuse is challenging.” 

TikToker Kimmi Rhoades (@kimmirhoades), who has a following 1.8 million strong, echoed this. 

“I get called fake every day on social media,” she said. “People are ruthless, and they think the worst of people… or they don’t understand someone’s condition, so they assume it isn’t real. I would ask people to hear us out and listen to our stories before they comment mean and hurtful things. We are human, too.”  

Because many disabled creators often rely solely on content creation for income, the very avenues they count on also perpetrate a cycle of reductive toxicity. The more people I spoke with, the more it became apparent that full-time creators with smaller audiences were spending more time making content than those with enough followers to generate substantial income or those with outside work. Because their income is more unpredictable, small creators work overtime to ensure ends meet,  putting their physical health at risk. In addition to the energy required to film, edit, and promote videos, many creators like Kimberly Kaye feel pressured to delay care or put their physical needs aside in order to create content.

Conversely, those with larger monetized followings spent less time perfecting their content but were more prone to be the target of hateful attacks, thereby putting their mental health at risk to earn the money they need to survive. There are very few resources or agencies for disabled individuals who are seeking help to grow their followings or navigate social media. Those that exist largely focus on larger creators, but it’s worth noting that there are some dedicated resources for disabled workers. C-Talent is an agency for disabled creators, while Chronically Capable and Power to Fly offer disabled-friendly job boards, and resources like text-based career guides, online job fairs, free portfolio reviews from company execs, and more.

Though faced with difficult circumstances, everyone I spoke with was optimistic about their chosen path and passionate about their content. 

“I’m blessed to have such a large platform to share my story on! I know I’m actually reaching people and educating them about POTS,” said Rhoades.

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*First Published: Oct 4, 2022, 6:00 am CDT