Stop Pitting Disabled People and Caregivers Against Each Other

As a follower of the labour movement, I keep a close eye on labour news, and I’m particularly attentive to developments in the realm of better protections and working conditions for caregivers such as aides, personal assistants, and companions who work with disabled people. Their sector of the labor movement is of special interest because it lies at the intersection of two important issues, and unfortunately, much of the narrative that surrounds it is deeply toxic. Effectively, disabled people and caregivers are being pitted against each other in an attempt to undermine both communities and eliminate the opportunity to work in solidarity with each other.

And, troublingly, it’s been very difficult to find a home for a story on this. As someone who writes and works with a number of progressive media outlets, I’ve pitched countless variations on this story and come up against brick walls wherever I go, including at those which focus on labor issues. Some members of the labour movement don’t seem interested in hearing the disability side, while some aspects of the disability community don’t want to acknowledge the labour issues, and no one seems to be aware that there shouldn’t be sides in the first place.

For those unfamiliar with this issue, historically, caregivers have been subject to special exemptions under labour law that create unfair and sometimes unsafe working conditions for them. This includes low wages, overtime, lack of insurance and other benefits, and limited employment protections. Many caregivers belong to marginalised communities; women of colour are commonly hired to provide caregiving services, and many are undocumented. Notably, many caregivers themselves are disabled, which underlines the fact that ‘caregiver’ and ‘disabled’ are not mutually exclusive categories.

Many disabled people need caregivers, to varying degree, to live independently or interdependently in society, and we all have the right to enjoy the full benefits of society as active members. The level of care needed can include things like helping with clean up around the house, providing help with toileting and other personal care tasks, accompanying a disabled person on errands, or other activities. Disabled people work with their caregivers to assess what they need, and they rely on their caregivers to improve quality of life, and in some cases, to stay alive.

Sadly, the law heavily abuses caregivers. Family members who provide care are often uncompensated and expected to perform it 24/7 with no breaks, which is dangerous and awful. Disabled people can find themselves backed into dangerous situations as a result of gaps in care: for example, funding may only be provided for set hours, which could leave a wheelchair user stranded in her own feces for hours at a time. Furthermore, if a disabled person can’t access care, she might be dependent on a partner or family member who could in turn abuse her.

It’s clear that a functional system for providing caregivers and relief care is necessary. And because caregivers provide such an intimate service for disabled people, those caregivers need to have established, trusting, caring relationships with their clients; my father, for example, supplements his Social Security income by working as an aide to two gentlemen with cognitive disabilities. They played an active role in his hiring, and have an established routine and schedule with him. They count on my father to be there during his shifts, and to remain a consistent part of their lives.

From the point of view of disabled people, thus, the important thing that needs to happen is to have regular access to caregivers when needed, to be able to establish relationships with specific caregivers, and to have a functional system for accessing care. For caregivers, the important thing that needs to happen is to have a safe and comfortable number of working hours, reasonable compensation (including benefits) for their work, and to have trusting relationships with their clients.

These are not mutually exclusive needs. In fact, one could argue that they are mutually beneficial. A fairly-compensated caregiver who is not being overworked can provide a better standard of care and develop a relationship without resentment. A client who isn’t stressed about finding caregivers to fill slots on a schedule is one who will be more patient with caregivers, and more able to work around their schedules.

Sadly, as caregivers fight for more protections, some disability organisations have come out against this emerging labour movement, claiming that it threatens disabled people. Meanwhile, caregivers imply that they’re being exploited by disabled people and their families. The result is an impasse between two groups who should be working in solidarity with each other, because they both, ultimately, want the same thing: a safer, happier, healthier, better working environment.

The problem here lies not with either party, but with the society and culture surrounding disability and caregiving. Caregiving, whether of disabled people, older adults, or children, is not valued by society, and consequently, wages are kept artificially low. A reluctance to provide reasonable allowances for caregiving means that disabled people are forced to scrimp on the number of hours they have available, and the funds they can offer (in many cases, they do not actually control hours or pay, as these are preset by the government agency that provides caregiver assistance). Lack of autonomy forces disabled people to pressure caregivers into providing overtime services, even if they may not necessarily relish the idea of compelling an aide to stay or asking an aide to come in early.

Pitching these two parties against each other dodges the larger issue here, which is that the culture needs to change. All labour should be valued, and the minimum wage in general must be raised, with no exemptions for any workers, including caregivers. Funding for caregiving must be increased to allow greater access to caregivers—many disabled people now rely on caregivers in shifts for 24 hour care, and similar shift arrangements can eliminate care gaps while also eliminating overtime for other disabled people. Disabled people and caregivers working together to accomplish these aims could do a lot, and it’s tragic to see labor and disability leaders refusing to embrace the possibility for solidarity.