Helena learned how to change her husband’s suprapubic catheter by filming a home health aide on her iPhone. Normally, a nurse would come in weekly to change it, but she had to stop coming in because of a potential exposure to Covid-19. Out of caution, Helena (not her real name) found herself changing it by herself, with the sterile kits provided by the home health agency for the nurse. “Hopefully, it comes out very easily,” she says over video chat. “You can just tug it right out of his abdomen.” His level of care need would be classified as “truly skilled nursing care,” she says, which is often provided at special facilities that are meant to be equipped and staffed to handle complex medical needs 24 hours a day. But they could not find a satisfactory facility, and now “I’m the skilled nurse,” she says. It is against Medicare policy for her to be changing the catheter; should the home health agency find out that the nurse taught her how to do it, Medicare could technically cancel provision of a nurse for the task. This would not be good, given the complexity of his care, so she and the nurse conspire for now on how to stay safe during the pandemic without losing services.
Helena also manages her husband’s feeding tube, through which he receives his medication. This can be difficult, in part because of the poor quality of pill crushers. This changed when she remembered that years ago she had bought a mortar and pestle for spices in her kitchen. Rather than struggle with the pill crushers, she began using this to pulverize the meds. “When I started doing that, my stress level just went down,” she says — this small change made the rest of their routines possible. To prep the crushed meds for the feeding tube, she also repurposes the many urine sample cups she has lying around the house, saved from a time when urinary tract infections were a regular issue. They are capped so she can pour the powder in, add water and shake. Then it’s ready to go in the tube.
The expertise of caregivers, alongside their ill or disabled partners, is overlooked in favor of the technologies themselves
Around the country, tens of millions of people act as regular caregivers for family and loved ones, with an eight million person increase in just the last five years. This rise has been enabled by the availability of medical technologies for providing complex medical care at home. Technologies that were once only used in clinical settings are now sleeker, smaller, and more mobile. In addition to the feeding tubes and catheters Helena manages, other caregivers I talked to have managed networked devices like mobile cardiac telemetry and sleep apnea machines that track usage and “events.” They also use insulin testing supplies, lymphedema pumps, and maintain complicated pharmaceutical cocktails. Such technological capabilities extend lives, especially for those with chronic conditions, and mean that people can live outside of an institutional or congregant setting, which disability rights and disability justice advocates have long argued for. People with chronic illnesses and disabilities simply live better at home. They’re less likely to be at risk of infection, which has been particularly devastating for congregant care settings during Covid-19. It’s far less costly than hospitals and nursing homes; and being at home gives disabled and ill people more autonomy.
While these technological developments afford a level of autonomy that was unthinkable in the past, in the context of private healthcare and the lack of home care services in the U.S., they also create new issues: Sending people home with new technologies creates a new, yet often invisible, unpaid labor force in the form of caregivers like Helena. The intimate lives of these caregivers are often erased by technosolutionism — a preoccupation with “innovation” in managing illness or disability obscuring the fact that people are still required to enact care. These technologies may help in managing disease symptoms and lowering costs for hospitals and for-profit healthcare providers, but they require a legion of generally unpaid and unsupported users and maintainers to do so.
Caregivers, alongside their ill/disabled partners, master medical technologies and develop new forms of expertise. This expertise is overlooked in favor of the technologies themselves, which are inevitably limited in their utility; families with ill/disabled family members must cover the gaps on their own, developing new forms of knowledge and enactment that largely remain out of view and unacknowledged. The same technologies that relocate care to the home also erase the people needed to use, maintain, and enact them.
To begin with, the arrival of such technologies has radically changed who is defined as a stable and discharge-ready patient. Known as the phenomenon of going home “quicker and sicker,” studies consistently show that hospitals are keen to reduce costs, and one way of doing so is by decreasing the length of hospital stays. This means sending patients home (or to other congregant care settings) to be cared for by a family member, with conditions that are increasingly more precarious, complex, and long-term. Meanwhile, the U.S. is the only industrialized nation in the world that does not offer universal healthcare and has minimal publicly funded homecare. Instead, family caregivers are relied upon to contain long-term care costs. There are more than 43 million caregivers like Helena, and as the number of people over age 65 rapidly expands, shifting patterns of disease mean that chronic illnesses have far eclipsed acute ones; rates of disability also continue to increase, with about 27 percent of the U.S. population classified as disabled.
People are increasingly sent home with a variety of more and more complex technologies that require an array of skills to manage. In my interviews, caregivers described regularly employing blood pressure machines, glucose monitoring devices and insulin shots, and infusion equipment like tubing, hanging bags and computerized infusion pumps that might get error codes or become occluded. Caregivers change foley, condom or suprapubic catheters; they run and maintain CPAP machines, suction machines for removing excess mucus, nebulizers and hospital beds. After discharge, one caregiver told me that a nurse was sent to their house for a few weeks as support for wound care, but the role of the nurse was to train her in providing wound care — “that way it’s cheaper.” She learned to clean amputation wounds, change dressings, and run a lymphedema pump to move excess fluid off the remaining limb. Other caregivers I spoke to also provided wound care using sterile gauzes, iodine, and other supplies for monitoring and preventing any bed sores that arise.
Certainly these technologies and tools allow for people to be cared for and live in their homes. But they do not eliminate the need for humans to provide care and connect with one another. Rather, they intensify the care required, and alter who is doing it. The false promise of eliminating human and social need through technological innovation has been criticized at length in other fields. In her book More Work for Mother, historian Ruth Cowan outlined how gadgets marketed to eliminate certain aspects of housework — such as the vacuum or microwave — resulted in more work for the women who had to manage such devices. More recently, Astra Taylor coined the term “fauxtomation” to describe how technologies meant to automate workplaces only shift who does the work and what kind of work gets done. Similarly, researchers have found that medical technologies deployed in the home have deeply ambivalent outcomes; at once giving people the autonomy to live at home, while presenting new and immense challenges.
If caregivers are “good at it,” then their partner remains home, uncaptured by hospital data systems
Once at home, not only do caregivers have to learn to use, maintain, and even repair medical technologies; they and their ill/disabled spouse also discover that a whole host of other changes need to be made for living well, facing a multitude of often unanticipated needs, requiring new adaptations and engineering at home. To put it simply, medical technologies do not “solve” the entirely natural human experience of disability or illness. Instead, a whole new set of improvisations with everyday objects may be required to create a livable world, as unique bodies and needs interact with their environments. Among many other methods, caregivers described such everyday improvisations as cutting the top of a sock and sliding it up just below their spouse’s knee to prevent skin irritation from a brace; or adding an inch of wood below dining table legs to accommodate the height of a wheelchair. Another caregiver I spoke with over video, Magnolia, explained how she solved the problem of her husband’s leg pain. He spends all of his time in bed now, but having a blanket over his legs and feet caused him tremendous pain. So Magnolia took an old drying rack for hanging wet clothes, put it at the bottom of the bed, and slid one of its arms under the covers so they would hover over him. “It’s very old, it was my mother-in-law’s,” she says. “I saw it just sitting in the garage and said, ‘I know a good use for that.’ I’m a scrounger!”
Home care requires everyday people to engage in what Faye Ginsburg and Rayna Rapp have called “disability world-making,” which involves solving problems with everyday objects, tinkering and hacking to make worlds livable. (This phenomenon is what led designer Liz Jackson to describe disabled people as “the original lifehackers.”) Since most homes and objects are designed without disability in mind, the collision of everyday objects and complex medical care in homes generates friction. From this friction emerges an ingenuity that reflects Cass Hartblay’s notion of disability expertise, which is “enacted knowledge specific to disabled people, acquired through life experience in non-normative bodyminds.” Such enactments are often executed through the alteration and reinvention of everyday objects and technologies, which is part of what science and technology scholars Aimi Hamraie and Kelly Fritsch call “crip technoscience.”
The people I have spoken to embody these concepts in their daily lives. Their examples are similar to what Laura Forlano describes as “intimate infrastructures” as she reflects on her own participation in the maintenance of technologies that manage her diabetes. One person I spoke to learned that their ill spouse’s favorite wheelchair was going to be discontinued. She immediately ordered extra parts — brake lines, casters and arm rests — in preparation for wear and tear so that “when they go, that chair will last me a while.” Meanwhile, others learn how to take apart manual and power wheelchairs in order to fix the devices themselves, because the “official” repair process is expensive and can be months long. Disabled people have a long history of such repair cultures, calling into question the over-emphasis on technological innovation, and the need to turn our attention to the essential and ongoing role that maintenance and repair play in care. Understanding that maintenance, repair and care are intertwined means shifting our gaze from the newest and latest breakthroughs to the adjustments and calibrations already being made by caregivers and ill or disabled people striving to navigate the everyday routines and intimacies of home.
In the absence of adequate home care funding and support, shifting care to family caregivers also means that caregiving never seems to end or pause. Over video chat, Magnolia tells me that she is never off duty. Even when her husband is sleeping or listening to an audiobook in bed, she must constantly check on him through a monitor to be sure he hasn’t stopped breathing. On the screen, she shows me different setups she uses to monitor him visually and maintain communication with him. In addition to cameras, he has a button he holds in his hand at all times that pings her if he needs something, and an app that goes directly to 911. Day or night, there is always a sense of vigilance and a feeling of being on the edge of catastrophe. “When I get up,” she tells me, “the first thing I do is look at the baby monitor and make sure nothing has happened. Once he got twisted up and his legs were off the bed and the catheter was all messed up. And I check to make sure he’s breathing.”
As another caregiver told me, a partner providing care at home “offers exquisite care that no one else would be able to deliver.” And this is a good thing; home care for ill/disabled people is key to enhancing their freedom and autonomy and the maintenance of family and community relationships. Sometimes this care is performed with feeding tubes and catheters; other times it’s repurposing a clothes-drying rack or a mortar and pestle. Yet every single caregiver I have spoken to told me that medical professionals don’t ask them about home routines, and that they don’t necessarily feel seen as experts in caregiving by the larger healthcare team. Many caregivers see multiple specialists as well as a primary care physician, but almost none seem to meaningfully inquire about these aspects of day to day life. The invisibility of their expertise renders their labor invisible too; if they’re “good at it,” then their partner remains home, away from a clinical gaze and uncaptured by hospital data systems. As another caregiver told me, “People think if there’s not a crisis, there’s not a lot going on, but you do so much to keep the crises from happening.”
Care is at the center of socio-technical systems. Real “solutions” would be mindful of the sort of ingenuity required to provide care on a daily basis
Care, in its many forms, has long been rendered invisible. Scholarship on care emphasizes that care is invisible precisely because it is demeaned as “women’s work,” taken for granted, and assumed to be natural for women, even as it is central to the reproduction of society. At the core of this is the assumption that women provide potentially “exquisite” care out of some innate expression of femininity and, as it is their natural inclination, this care should be free. While these are important critiques in feminist analyses of care more broadly, in the context of caregiving in the presence of illness/disability, they also reflect the utter devaluation of ill/disabled people’s lives. Explanatory frameworks that rely solely on the devaluation of women to understand the invisibility of caregiving miss that ableism is the underlying logic that prevents ill/disabled people and their caregivers from living well. The lack of care infrastructure for disabled/ill people in the U.S. — patched over by the heavy expectations placed on family members to provide care, without much support — reflect the ableist sentiment that ill/disabled people are “drains” unworthy of our collective investment and care.
Investment in home care — through better and more expansive funding for long-term services and supports, for instance — would help ill and disabled people, and their caregivers, to live well, accompanied by the technologies that move care out of the clinical setting. Instead, investments in corporate infrastructures merely outsource caregiving to family members who are then tasked with operating the medical technology; or lead to the development of private long-term care insurance plans that few can afford. Most cannot even qualify for such plans — you cannot obtain a long-term care policy if you already have a condition that warrants it. Many caregivers also lamented medical supply policies, telling me that they are often given just one of something they needed many of, or too many of something of which they only needed one. They pointed out the lack of coverage for repair parts like casters and brake lines. These misalignments reflect the notion that advanced technology in standard quantities can provide quick solutions appropriate for any and all situations.
Medicaid programs, which require beneficiaries to be impoverished, have years-long waitlists for home care and tend to favor institutional settings. Such public programs for long-term support services for disabled people and their families are continually cut and are extremely difficult to qualify for. Meanwhile, family caregivers may be so occupied with providing care and managing technologies that it can be impossible to work a paid job or fulfill other social roles. In addition to the dire economic consequences of this, family caregivers often experience a decline in their own health as a result. Studies show that caregivers experience trauma and chronic health problems, many brought on by the stress of coping with a system that asks them to do more work with more complex technologies, but does little to help. In response, some disability communities have created care collectives or care webs to meet the needs of those left behind by a dismal U.S. public care infrastructure.
These stories reveal that care is at the center of socio-technical systems. We often miss that real “innovation” isn’t all sleek technology, but rather found in the everyday, living processes of caregiving and collaboration. And we should see the work of caregivers in those terms. Real “solutions” would be mindful of the sort of ingenuity required to provide care on a daily basis, and focused on supporting care in its vastness and complexity, rather than assuming expensive tools have the power to vanquish needs or can substitute for investment in care supports.
Instead, people find ways to care in the context of profound structural abandonment, as publicly funded home care programs continue to be cut and services denied. The stories of people like Helena and Magnolia push back against technosolutionist narratives that erase the people needed to use, maintain, and enact care; they also contribute to what Rapp and Ginsburg call the “social fund of knowledge on disability.” The gaps where technologies fail their users, and the ways that people engineer alterations and repair, constitute disability expertise; caregivers and their partners enact this every day.