What my research participant made clear to me that day is that the lack of robust and accessible social programs for long-term care is merely a symptom of a deeper, more poisonous problem: Disability is a part of life, and we hate it. Literally.
Here’s what we don’t talk about when we talk about the care crisis. When it comes to disability, we devalue care (both caregiving and paid care work) because we devalue the people who need it. It’s why we position care as a response to a horrible disaster. It’s why we refuse to adequately fund home care and fairly pay care workers. It’s why we rely on the 53 million (and climbing) unpaid family caregivers across the U.S. to provide care for free. It’s why disabled people internalize the idea that they are worthless “takers.” We tell people we don’t care about them when we refuse to provide the means for them and those who care for them to live well.
In the lead-up to the BBB bill, there have been many conversations about our nation’s care crisis. If we look closely, our disdain for disability and the lengths we’ll go to to avoid talking about it begin right there. If talked about at all, disability is often safely disguised as an elder care disaster, encapsulated by the phrase “silver tsunami,” which refers to demographic changes in the U.S. By 2040, 80.8 million baby boomers will be over 65. This is more than twice the number of people over 65 in 2000. Since the prevalence of disability rises with age, approximately 70 percent of this cohort is predicted to need long-term care.
While it’s true that rates of disability rise with age, and these numbers are indeed daunting, the “silver tsunami” framing suggests disability is somehow only for, or synonymous with, the elderly. But according to the Centers for Disease Control and Prevention, 26 percent of U.S. adults live with a disability; 6 in 10 have a chronic condition; and 4 in 10 have two or more.
In December 2012, at age sixty-one, Judy received a diagnosis of early onset Alzheimer’s. The news was deeply distressing, igniting within me a...