In December, people with amyotrophic lateral sclerosis (ALS) and their loved ones received some rare good news: in an increasingly unusual act of bipartisanship, Congress passed the ACT (Accelerating Access to Critical Therapies) for ALS bill. On December 23rd, President Joe Biden signed the legislation into law.
ACT for ALS expands access to investigational treatments for people living with ALS, an incurable neurodegenerative disorder that causes a person to become progressively paralyzed. It also creates a grant program for research into ALS and related diseases. Many people with ALS cheered the law as offering a ray of hope for those diagnosed with what is currently a fatal illness.
But at the same time in December, there was bad news for disabled people and their caregivers. Congress tabled the White House’s Build Back Better social spending and climate agenda when Senator Joe Manchin (D-WV) withdrew his support for the plan. The legislation now seems unlikely to advance.
Among other things, Build Back Better included $400 billion in funding for Home and Community Based Services (HCBS), providing home care for the 800,000 sick and disabled people currently on Medicare waiting lists. People with ALS rely on home care so that family and friends do not have to become fulltime caregivers, a physically and emotionally exhausting task.
Many people do not realize that although skilled nursing care—which deals with medical needs such as administering medications and tending to wounds—is covered to a certain extent by many health insurance plans, almost no plans cover caregiving, which pertains to personal needs such as dressing, bathing, and housework. Private home care is prohibitively expensive for most people, even as caregivers themselves make less than a living wage. Parents of young children will recognize a similar dynamic with daycare costs and wages in the United States.
My life depends on home care. My husband, Ady Barkan, the subject of the documentary Not Going Quietly, is now almost completely paralyzed from ALS. Without full-time professional caregivers, I would not be able to care for him and our two young children while holding down my job as an English professor at the University of California, Santa Barbara (UCSB). For one thing, I can’t lift him by myself, which would make it impossible for him to get in and out of his wheelchair.
Without home care, Ady would have to live in a nursing home, away from his family. During the pandemic, that would have meant months of separation before vaccines became available. In California right now, nursing homes are in a new state of lockdown, with visitors required to show proof of vaccination with a booster shot and a negative test before entering facilities. Most children are still not eligible for booster shots or, for those under five, vaccination.
As we enter the third year of the pandemic, caregiving remains a primary topic of discussion and debate. Once again, many parents are trying to work from home while children attend virtual school, while vulnerable people are isolating, with little social support.
Despite the centrality of care needs to our daily conversations for the past two years, we have not taken the opportunity to put better caregiving structures into place. Congress can come together to try to find a cure for ALS—a worthy and necessary goal, of course—but not, apparently, to support people living with ALS and other disabilities right now.
As a scholar of eighteenth-century Britain, I often put questions of caregiving in historical context. People in this earlier period had little state support for their care needs. But they developed forms of communal caregiving that reveal, by contrast, the shortcomings of our own individualistic, privatized care system.
Before the advent of what scholars call the 'normate'—the medicalized regime in which we see a binary split between health and disability—'disabilities were not seen as rare mistakes to be fixed, but [as] simply a condition of life,' Talia Schaffer writes.
Scholars of disability have argued that, prior to the mid-nineteenth century, people did not conceptualize disabled bodies as abnormal. Before the advent of what scholars call the "normate"—the medicalized regime in which we see a binary split between health and disability—"disabilities were not seen as rare mistakes to be fixed, but [as] simply a condition of life," as Talia Schaffer writes. Disability was not a status but a condition that one could shift into and out of, as many people experienced extended periods of poor health.
My research on eighteenth-century communities bears this out. For example, a group of Quakers based in Ballitore, Ireland, whose papers are held at the UCSB Library, constantly discussed friends’ and family members’ health concerns alongside religious questions and political issues such as abolitionism and women’s rights. Many Quakers who were religiously and politically active also experienced periods of disability and the community worked to support their integration into social life.
One woman, Anna Taverner, appears to have had long periods of illness where she rarely left her bed. However, members of the community worked to include her in daily life, supporting her in their homes and visiting her bedside. Taverner was considered to have a special religious gift that was not undercut by her physical disability. As schoolmaster Richard Shackleton wrote in 1785, "I was lately sitting by poor, dear A.T.’s bedside – we began a little conversation; an humble, tendering sense ensued, and I believe somewhat of Good was near. She remains the same afflicted, comforted, distressed and supported creature." A few years later, Taverner’s poor health appears to have continued, as Shackleton wrote of her, "dear Anna Taverner – considering she is Anna Taverner, she is wonderfully well," adding, "her mind enjoys a pure, serene air."
As this brief example shows, people in earlier periods often understood caregiving as a communal endeavor involving both physical and mental support. Because people like Anna Taverner were not institutionalized, they were able to remain vital members of their communities.
Today, we either expect family members to shoulder the burden of caregiving—which can be isolating and financially destructive—or for disabled people to live in nursing homes. While Build Back Better appears stalled at the federal level, California is taking steps to address this situation. On January 20th, AB 1400, known as "CalCare," advanced out of the Assembly Appropriations Committee; it is now headed to a vote on the California State Assembly floor. The proposed single-payer system would cover some home care, which advocates argue would present cost-savings over the current nursing home system.
As Ady said at the Assembly Health Committee’s hearing for the bill on January 11th, "Under CalCare, seniors and disabled people would have the freedom to live safely at home, with the same care that allows me to be here with you all today. All Californians would receive the care they need, regardless of their employment, immigration or marital status. And we would promote health equity by investing in care facilities in our most underserved and rural communities."
As we await action at the federal level, California has the opportunity to lead on health care and caregiving. By doing so, we would acknowledge what our current model often tries to hide: that everyone is or will become disabled, or love or care for a disabled person. Disability is a part of life and we must find ways to support disabled people in living day to day.