Millions of people in the United States live in ‘care’ facilities of one level or another, designed to provide services to older adults, people with disabilities, and people living at the intersection of these categories. They included locked ‘memory care’ wards for adults with Alzheimer’s, assisted living facilities for aging adults, institutions for disabled people, and a variety of other institutions with different missions and goals. Even as the disability community has been fighting institutionalisation as the civil rights violation that it is, the number of people being sent to institutions is on the rise, for a number of reasons.
We live in an aging society, one where more and more older adults need support. We also live in a society that doesn’t value caregivers, which forces disabled people and older adults into institutional care because their family members aren’t capable of providing the support they need. Instead of providing support like respite care, in home support services, and more, the government allows family caregivers to flail, unpaid, until they can’t take it anymore. Sometimes, people opt to go into care because they think they’ll be less of a burden there, they want to follow their friends, or they genuinely believe it will provide them with advantages.
Thus, the industry of running such facilities is booming. Eldercare in particular is a major growth sector, with for-profit facilities coming up like mushrooms right and left. ‘Care’ facilities never provided the best of atmospheres in many cases, but conditions have grown even worse; shrinking numbers of poorly-paid staff, rampant abuse of residents with no accountability, limited government oversight, people dying in suspicious circumstances while in the custody of such institutions, and other problems are blooming, even as more and more people are pushed into care.
Only recently have the media started covering abuses in care, thanks to the work of groups like Pro-Publica, PBS, and the Center for Investigative Reporting. These groups are performing an important public service with their continued investigative reporting and persistent pursuit of the truth about a variety of social issues that have remained buried, from head injuries in football to forcible sterilisation in California prisons. Their work is critically important because it forces members of the public to learn about, and pay attention to, abuses, exploitation, and other problems in our society.
In the case of care home abuse, a few headlines cropped up over the summer in the wake of a major report chronicling deaths, physical assaults, rapes, and abuse at care homes. The report noted that states like California have very limited oversight over many types of care facilities, and that such facilities routinely get away with horrific conditions and abuse of their residents across the US, even with family members advocating, filing lawsuits, and taking other steps to protect the people they love. Those who appeared for interviews were both furious and heartbroken, not just because of the losses to their own families but because of what their experiences said about society.
Yet, those headlines seemed to dwindle almost immediately afterwards. Few progressive publications picked up the story and ran with it, even though there was a great deal of room for exploration and expansion. There appeared to be little interest in elder abuse and the implications it has not just for society, but for each of us as an individual who will (hopefully) age and could someday be in the position of needing care. Such stories can be the basis for reform movements, but only if people pick up the torch and actually start pushing for reforms.
For example, the elder rights and disability rights movement have a lot in common when it comes to issues surrounding forced institutionalisation and the need to support community living first. That means there’s a lot of room for collective organising on promoting better rights for caregivers, compensating family members who provide care, creating sustainable environments for family caregiving, and promoting independence for people who want to stay in their communities, not institutions. For those individuals, the choice shouldn’t be family care versus an institution; community-supported living is achievable and much more sustainable.
But these communities need support, backing from other communities interested in working with them to make the world a safer and freer place for everyone. For everyone who turns their face away from yet another report on elder abuse or torture of disabled people in institutions, the ‘care’ industry gets braver, more audacious, and more horrific. For every witness who refuses to be silent and takes an active role in addressing these issues, the industry is shaken, because it’s forced to understand that the vulnerable people it’s abusing aren’t easy victims who can be targeted without consequences, because people are watching.
That requires outreach and advocacy to get people engaged, but it also requires pressuring local media to get them engaged with covering these issues. It’s not uncommon for stories to be issued under a Creative Commons license or generous syndication terms, which allows other news organizations to easily pick them up. In other cases, pressure from readers, listeners, and viewers could encourage a station, network, or paper to send out a reporter and actually do some news reporting, instead of relying on canned content and limited local coverage.
This is a world in which institutionalised people are suffering, right now, and there’s no reason they should be. For people who want to live in institutions, they should always be an available option, and they should be a safe, comfortable environment where residents are treated with respect and dignity. This, what we have now, is mostly the warehousing of human beings in oppressive, miserable environments, and it’s shameful.