On a recent visit with research participants for my book on spousal caregiving, I sat with a man who had a stroke three years ago, at age 59. He can only use one side of his body, rendering him unable to work; his wife serves as his caregiver. He told me about how much he hated himself. “All I do is take resources. I don’t contribute anything.” Tears streamed down his cheeks.
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 2014, I suffered a horrendous roller derby injury hurting my coccyx and dislocating both hips over the span of nine months. I never even made the...