Disabled people and the gig economy: living paycheck to paycheck

Editors note: We recognize that within the disabled community, there are varying ways of self-identifying. In this article on disabled people and the gig economy, the author uses person-first language. We do recognize the right to self-identify using identity-first language, or any other language that a person chooses.

Disabled people and the gig economy: living paycheck to paycheck

When disability income is not enough, gig work offers disabled people a way to keep on living. But a lack of regulation leaves disabled people cold.

During the 2018/2019 U.S. government shutdown, approximately 800,000 workers went without pay. Some government workers turned to gig work to make ends meet. Twitter was filled with stories of workers who began driving for Uber or Lyft during the shutdown as a stopgap measure.

Government workers are not alone in turning to gig work to make ends meet. The government shutdown is one example of systemic failures that leave many Americans without a safety net. In a study earlier this year, I find that people with a disability also turn to gig work to get by. People with disabilities do gig work because they need a flexible job that allows them to stop working when they can no longer work that day, and to take breaks as needed.

Most of these gig workers I have interviewed live paycheck to paycheck or “cash-out to cash-out,” as most gig companies allow workers to cash out their earnings more than once per day. Take Jonathan, for example. A former band director from Tallahassee, Florida, Jonathan has had three strokes and three open-heart surgeries. He drives for Lyft; he needs a job that allows him to take time off when his chronic pain flares. He explained:

“I’m at the mercy of the weather. Little things will trigger my chest. So, I’ll have to take off time for work, and that’s not fair to the boss. But Lyft lets me clock in and clock out whenever I want. So, when I feel good enough to drive, I go drive. When I don’t feel good enough to drive, I don’t have to beg a manager. I don’t explain it to anybody. I turn it off and go home.”

After having heart surgery, Jonathan wanted to work, but no one would hire him. This is because of the artificial valves in his heart. He said: “I went on like 26 different job interviews, but people could hear the clicking in my heart from the artificial valves, and I had no chance of getting hired. I get job offers in the car all the time. But then we start talking, and they’re like, yeah, we can’t hire you.”

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Jonathan receives Social Security Disability Income (SSDI), but it is not enough to cover expenses for him and his family. He cannot afford his medication or the cost of healthcare. “I’m supposed to have a doctor’s appointment today,” Jonathan told me the day I interviewed him. “They wanted $175 upfront that Medicare won’t cover, so I had to call up and say I can’t afford it.”

While many people with disabilities collect SSDI, it is often not enough for people with families to get by. SSDI rules prevent people from working over a certain number of hours or earning over a certain amount of money. Being able to control hours and earnings through gig work allows recipients to continue to collect SSDI while earning much-needed extra income.

But gig work as the work of last resort leaves people who do these jobs vulnerable to exploitation.

Many gig workers experience income volatility, not knowing how much they will earn in a given week and being unable to meet their expenses as a result. Additionally, gig workers are not given benefits like paid sick leave, and they are only paid for the time spent completing a task. For example, rideshare drivers are not paid to drive to the passenger when picking them up or to wait for the passenger if they are running late.

Read more: To survive as a queer disabled millennial I had to became a workaholic

But unlike genuinely self-employed workers, gig workers are not allowed to set their own prices or negotiate the platform fee deducted from customer payments. All these parameters are determined by the gig platforms themselves. The volatility of gig work earnings often times compels those with disabilities to work as much as possible when they are able, in preparation for times when they are not.

Kathleen, 21-year-old from a smaller town in Florida, is another example of this. In addition to Lyme disease, Kathleen has a rare sleep disorder called idiopathic hypersomnia, where she has difficulty waking from sleep, causing her to sleep much longer than usual and to stay drowsy even when she is awake. She drives for Uber almost anytime she is awake because she does not know how long she will be asleep when she isn’t awake.

Kathleen expressed frustration with society’s perception of her and others with disabilities. She said, “There are a lot of unrealistic expectations for chronically ill people…People always tell me, Oh, you should work out more. Oh, you should change your diet. All of those things don’t work for most of us.”

Kathleen aspires to eventually finish her bachelor’s degree in nursing, but right now, her priority is paying for her car insurance. Before December, she was not able to afford a car insurance policy for rideshare drivers. She only just switched to a rideshare policy the day that I interviewed her. She said, “I don’t make much, and I’m limited with working, so I pretty much just work toward having my car insurance payments, and if I get a little extra, I can afford a little bit of life.”

Jonathan also expressed frustration with his experience looking for work and resulting in financial insecurity. He said, “The whole mentality of employment today is, if you’re damaged, we don’t have to hire you because the government’s taking care of you, but the government taking care of us is complete garbage. It’s just–it’s worthless. I would rather work a real job.”

Despite financial hardships and health issues, many of the people I interviewed said that they will continue to do gig work for one main reason: for most, there is no other option. Even Jonathan, recovering from multiple heart surgeries, said, “I figured if I can sit in front of the TV, then I can sit in the car and drive. It hurts my chest a lot to drive. But I still do it because there’s nothing else.”

While many government workers turned to gig work for emergency funds during the government shutdown, the problem of the rise in precarious labor and financial insecurity is much wider spread.

Americans are turning to gig work as a safety net when institutions we take for granted like public sector work or disability protections fail. When disability income is not enough, gig work offers people with a disability a way to keep on living, but a lack of regulation leaves already disadvantaged members of the workforce even more vulnerable to exploitation. Policymakers should, therefore, examine how best to regulate the gig economy to address gaps in worker protections, benefits, and income security.