As if the gig economy wasn’t exploitative enough, it’s now filling a gap in another exploitative industry that values profits over human lives—both the lives of those needing the service and the lives of those providing it.
When I was in college, I worked with California’s In-Home Support Services (IHSS) as an aide in the homes of disabled people. My job was to support people in completing activities of daily living (ADLs): I swept and mopped, did dishes and laundry, dusted blinds, decluttered bedrooms, grocery shopped, picked up medication, gave rides to doctor’s appointments. I was proud of my work; I made it possible for people to stay in their homes, rather than having to enter long-term care. I liked my work. I was also paid low wages for my work.
But even at minimum wage, the people I worked for would never have been able to afford to pay me, relying instead on state assistance. Today, ten hours of “homemaker” services like those I provided would be around $1,127 a month. The average monthly disability payment—for those who manage to qualify—is $1,234. Not all disabled people qualify for Social Security disability programs or for state programs like IHSS, however, and those that do often do are often not assigned enough hours to meet their needs, if they can even find workers. People do not like the pay, the hours, the conditions; it’s hard work.
Because society does not provide disabled people with the support they need to live independently and safely, many people have been forced to fill the gaps for themselves via services that weren’t designed for them, but have become a lifeline. As a result, gig economy workers, such as rideshare drivers and shoppers, are now inadvertently assisting with ADLs and entering the care and support workforce. An Instacart driver is buying supplies someone can’t access because they’re bedbound, can’t go to the store, and don’t have a support worker or a social network to help. A Taskrabbit worker is putting a mobility device together because it wasn’t delivered assembled, and the client can’t do it independently, even if she could get it up the two flights of stairs to her apartment. A Lyft driver takes someone to the doctor because there’s no public transit, and no paratransit service.
Technology has already profoundly destabilized labor. It’s changed the way we eat, access medical care, interact, and lead our daily lives. But nowhere is this destabilization more striking than in the form of an army of gig workers across the globe meeting our every conceivable need, including, inevitably, care for elders, children, and disabled people. The gig economy has been a tremendous boon for the disability community, opening pathways of connection, communication, resources, and employment to people who are more at risk of being socially, economically, and medically isolated. But while the rise of the gig economy has expanded access to society for disabled people, it has become a double-edged sword: that access has been at the expense of gig workers, some of whom are disabled themselves. As if the gig industry wasn’t exploitative enough, it’s now filling a gap in another exploitative industry that values profits over human lives—both the lives of those needing the service and the lives of those providing it.
For the time being, it is necessary to recognize that among its many functions, and in the midst of an inherently exploitative and harmful business model, the gig economy can assist some people with ADLs in a way that is not currently replicated by any other usable option. In some cases, the gig economy itself has problematically replaced those other options, such as stores relying on Instacart instead of staff to shop for customers, or Uber and Lyft pushing out the taxi industry, including legally required accessible cabs—often claiming this will result in lower costs for consumers while actually increasing pricing via surge metrics or simple rate increases once they choke out the competition. We must engage with this understanding in order to effectively criticize the gig economy and the way people use it: If a disabled person orders groceries from an app, taking advantage of a discount to make them affordable, telling them to “order directly from the store” is useless if the store no longer offers delivery, or doesn’t take SNAP for delivery orders, or has additional charges that make the groceries too expensive. The question is not “why are you ordering via app when you know it’s bad” but “what are the barriers to alternatives, and can we solve them.”
Conversation about the gig economy’s role in the disability community often ends up highly individualistic, targeting people rather than the system and implying that disabled people are uniquely exploitative or unwilling to look for alternatives. But talking about app-based end issues (e.g., Uber exploits people) rather than the problem that needs to be solved (e.g., people need to be able to get around) elides the option of discussing whether better solutions exist, and if they do not, whether it is possible to make them happen as a community, acknowledging a collective social responsibility rather than blaming individuals for forced choices.
These conversations also notoriously sour very quickly, and tend to skirt the larger implications of what it means to become part of the care economy, one designed to generate profits for a few at the expense of many, and one where disregard for disabled and elder lives makes that profit possible. The collapse of one exploitative industry into another should be decried, but the problem is not the people who need these services. Some disabled people need support to lead full lives, and that support requires workers who deserve justice and respect.
According to a 2021 Pew poll, nine percent of workers in the U.S. were current or recent gig workers, and while not all were involved in care, a not insignificant portion were, or were using their gig jobs to support unpaid care work. These workers join 3.6 million health and personal care aides as well as other care professionals, a number that is projected to grow with an aging population. Among them are many disabled people taking advantage of the “convenience” of gig work—flexible days, hours, and tasks that come, of course, with the same exploitation, including harsh ratings and penalty systems, abuse from customers, and being forced to use their own equipment for work.
Both traditional and gig care workers are underpaid, expected to work long hours, provided with minimal benefits, and not offered protections from workplace hazards such as harassment or abuse. On-the-job injuries are very common in traditional care work and a serious risk for gig workers, as well. These workers lack access to health insurance, disability insurance, paid leave, sick leave, and other benefits that might help them manage existing or work-acquired disabilities, unless they are unionized, which is rare. They are treated as disposable. The gig economy’s entry into this field is a feature, not a bug, for shareholders and executives, another source of throwaway labor they can charge a premium for.
This exploitation is also bound up in racism; Black people, Southeast Asians, and Latinx workers are more likely to be employed in these economies, where they are paid less and treated worse than their white colleagues, viewed again as a source of cheap, easy come/easy go workers. Wage theft is rampant across the care industry, even as gig apps constantly change payment policies to cheat workers. In New York State, for example, more than 100 care workers won a historic $450,000 wage theft judgment in 2021, after working 24-hour shifts that could extend over as many as five days at a time. Poor working conditions, abuse, and low pay are also driving a home health worker shortage.
This is an entire economy of capitalist abuse, enabled because society does not view disabled people as worthy of dignity, and therefore does not respect the workers who support them. This includes workers who are indirect care workers and who would not necessarily describe themselves as such if asked.
Historically, there has been a resistance within the disability community to talking about exploitation in this context. Even as workers organize and some disabled clients support them, there’s a lingering hesitancy and fear to engage with an unavoidable tension: If you agree that gig workers, home health providers, and others who assist with ADLs are being exploited, and you use these services, you are admitting that you contribute to that exploitation. That’s a sobering and uncomfortable statement to make, but it is a necessary one to engage with when considering solutions to this problem—especially since worker exploitation does not begin or end with disability services, illustrating a broader social issue that requires a response from everyone.
This issue is also largely not within the control of disabled people themselves. Unless disabled people are independently wealthy, the hours and wages of people such as in-home care providers are generally set by the state or an agency, if they are available at all—forcing disabled people to choose between accepting exploited help, or accepting no help at all, and potentially going into a long-term care facility, where workers are notably not treated well, either. All of this—lack of access to formalized care workers, poverty that constrains options, and few available resources—is pushing people toward the gig economy.
Sometimes, there is no good choice, because of decisions society has made about whose life has value and should be accommodated. This is a no-win exploitation situation, and it’s one many disabled people who need these services find profoundly unjust. Some people like to evoke “no ethical consumption under capitalism” here, misusing the phrase to suggest there’s nothing to be done and we should all throw up our hands. But perhaps people who commonly opine on how we are collectively trapped in capitalist systems that we can only escape through collaboration should acknowledge that when they are targeting disabled people for being trapped in, and relying upon, those systems. The focus specifically on disabled people who use these services rather than other clients is also…striking. Especially when the move instead should be to discuss what collective action one could embark upon to secure independence for disabled people AND justice for workers.
People who benefit from these services are not powerless to change care workers’ circumstances when they work collectively. Disability mobilizations in solidarity with home care workers and aides calling for better pay, benefits, hours, and working conditions have proven effective. Caring Across Generations, for example, has modeled a collaborative approach to fighting exploitation in caregiving settings. Similarly, disabled service users can and have mobilized to support gig workers, as when Instacart shoppers called for an app boycott in 2021. Many are eager to live in a world where their liberation is not dependent upon others’ oppression, but they can’t get there by themselves.
All workers deserve fair pay, safe working conditions, and dignity, and that should be a common goal that unites all of us. The notion that there is inherent opposition between disabled people and the workers (many likely to be disabled themselves) who provide them with the services that they need to survive is predicated on the incorrect belief that these two groups aren’t on the same side, and it is a deep distraction from the real enemies: Capitalism, disablism, and racism, and their relentless consumption of humanity for profit.
While working with IHSS, many of my clients didn’t like having to ask for help, especially those who were newly disabled; our intake conversation was often one of push and pull, what’s available, what’s imaginable, and what the two of us could improvise together regardless of what the state said was possible. The act of helping my clients was not exploitative, and their desire to get that help was not wrong. A just world for workers requires an end to capitalism, not disabled people: My state-determined wages and hours were the real enemy, and ultimately exploited us both.
Disabled people are worthy. The people who help them are not automatons. Disabled people collaborating to meet their needs will lift everyone up, but they also need to be listened to and respected when they express their needs and ask for sustainable and just help with meeting them. When those needs are unfamiliar, rather than pushing back, it’s an opportunity to learn, grow, and collaborate—with both sides equally valued. Neither care workers nor disabled people are at fault for the system they are trapped in, and they are better served by fighting that system together than they are apart.
s.e. smith is a Northern California-based journalist, essayist, and editor. smith's work on disability, culture, and social attitudes has appeared in publications such as the Washington Post, Time, The Guardian, Rolling Stone, Esquire, and Vice, in addition to anthologies, most recently Body Language (Catapult, 2022). They received a National Magazine Award in 2020 for their work in Catapult.