One of the consequences of the social devaluation of disability is the devaluation of care providers, at the same time they are lauded as brave and heroic for taking on the ‘burden’ of disability; this is seen especially starkly with parents of disabled children, who often encounter the attitude that they are superhuman for not throwing their broken family members on the curb. Disability is not a burden. Needing personal assistants and aides does not make you a burden.
But, caring for disabled people is work. And it is often devalued as work, just as caring for nondisabled children and aging parents is not considered ‘real work.’ It does not escape my notice that the people tasked with this work are most commonly women, and that they are often expected to perform it for free, and to perform it endlessly, with no break. They may not be provided with any alternatives; the choice may literally come down to quitting your job to provide around the clock care without a rest, unless you can get friends and family to pitch in periodically, or institutionalising your family member, often in a facility treated as a warehouse for human beings, rather than a place where people receive care.
Caregiver exploitation is a serious problem with a myriad of presentations, perhaps starting with the exploitation of family members. People who provide assistance to disabled family members are expected to do so for free. Even if they have to quit their jobs, stop pursuing careers, and only leave the house under very controlled circumstances. They are not provided with respite care. This problem is often framed in terms of ‘disability is such a burden,’ when in fact it’s more that social attitudes about caregiving are a burden; people are expected to provide care, will be shamed if they cannot provide it, and are told to ‘just try harder.’ Assistance from the government and community organisations is often limited, especially now, in a time of substantial cuts to disability services.
This is dangerous. It’s dangerous for caregivers, who can experience burnout. Working 24 hours a day, 365 days a year, without a break, without pay, without benefits, is very, very draining. Caregivers often operate under tremendous stress and this has deleterious health effects. It’s also dangerous for their disabled family members. Burnout can contribute to the development of abuse, whether deliberate or negligent. It can create a sense of desperation and the belief that there is no escape, which, of course, contributes to depression and distress on the part of the disabled person, who starts to feel like a burden. When you feel like a burden, your thoughts tend to drift to ways you could be less of a burden.
Ways like disappearing. You’re not a burden if you’re dead. You’re not a burden if you ask your family to place you in an institution, even if you want to be in your home, if you ask to die so that people don’t have to care for you anymore. These stories are framed as personal tragedies, how unfortunate it is to be disabled, how miserable it makes you. They are social problems. They are the result of living in a culture where caregiving is uncompensated work thrust on the backs of whoever is most convenient. They are a result of living in a culture where you can ask for assistance and respite care, a night nurse, adult day care, anything, and you are told you do not need it, because there’s already a family member at home providing care, so what’s the problem?
Professional caregivers face a different kind set of circumstances. Many are underpaid, whether they are providing home health services to disabled people who can afford them[1. Which is very few of us, because most of us are poor.] or working in facilities that provide care to institutionalised people. Many are also exploited; large numbers of undocumented immigrants with limited training work in long term care facilities. In some cases, human trafficking is involved; every now and then a report about a facility using trafficked workers[2. ‘We had no idea!’] crosses my eyeballs and it makes me wonder how many more of those reports I just didn’t see.
When you are underpaid, when you are working in an exploitative labour situation, that, too, contributes to burnout and stress. Which also creates circumstances ripe for abuse. Whether people in long term care facilities are leaving patients to lie in their own urine out of negligence, or beating them for amusement, it has real consequences for residents.
People approaching the problem of caregiver exploitation from the perspective of caregivers often frame it as an individual problem. They tell us this is not representative of all caregivers, that it’s not fair to tar them all with the same brush. They miss the larger picture, which is the combined devaluation of disabled people and caregivers that contributes to the tolerance of unacceptably exploitative employment situations. Anyone in a position of high stress with no break from work is in danger of becoming a bad caregiver. It’s not a personal problem or failing, it’s a social one. Society in general is failing disabled people and caregivers.
Slashes to budget cuts in places like the US and the UK are leading to a complete dissolution of respite and support services for people with disabilities and caregivers. This means that exploitative employment, abuse, and death are going to go up. This isn’t because disability is a burden and a problem. It’s not because caregivers are inherently evil, awful people who are eager to find ways to torment their subjects. It’s because society in general thinks that people who care for people with disabilities are performing a very special charitable service, instead of engaging in work and doing their jobs.