Infrastructure Budget Bill – Ady Barkan and Caregivers

Last weekend my family of four, husband, 5 year old son, 22 month old daughter and I went to the zoo. We played on the playground, saw giraffes and lions, and had a picnic.

It may not sound remarkable, but to us any outing is an expedition. My husband, health activist Ady Barkan, has suffered from ALS, a neurodegenerative disease, or Lou Gehrig’s disease, for almost five years. He is almost completely paralyzed and uses a wheelchair to get around and a computer tablet that follows his students to communicate.

This trip to the zoo was only possible thanks to a fifth person who was with us: Rosalba, a member of Ady’s healthcare team. At least one caregiver is with Ady around the clock, helping her get in and out of bed, dressing, showering, eating and working, among other activities. Alone, I couldn’t have driven Ady’s wheelchair, watching my son, and pulling my daughter into our red wagon, but with Rosalba at the zoo with us, we were able to have a fun family day out.

Ady enjoys a walk with the couple’s two children, thanks to one of her caregivers.

Courtesy Rachael Scarborough King

In recent months, care has evolved from a personal concern to a political flashpoint. Democrats and Republicans have argued over the meaning of “infrastructure,” wondering if that term should include care and education. Republicans want to limit federal spending to “hard infrastructure” like roads and bridges and accuse Democrats of “redefine”To also cover child care and home care.

Republicans won their case in the bipartisan $ 1,000 billion Senate infrastructure bill, which passed in August without the $ 400 billion in healthcare funding proposed by President Biden. Now the fight has turned to the Democrats’ $ 3.5 trillion budget, which they hope to pass through Congress through the reconciliation process. The budget package has no Republican support and senses. Joe Manchin and Kyrsten Sinema, as well as moderates in the House, said they thought the price was too high. Congressional leaders determine how much to claim for health care expenses, with the House Energy and Commerce panel advancing just $ 190 million.not enough to erase current waiting lists for home care or provide a living wage for caregivers.

Meanwhile, progressive House Democrats have said they will only back the bipartisan infrastructure plan with sufficient funding for care in the budget package. If Congress cannot agree on a budget resolution by midnight tonight, the government will shut down.

My life depends on the support of caregivers. Without Ady’s caregivers, I would hardly be able to leave home, let alone have a demanding career.

The Republicans’ cynical argument that care doesn’t count as infrastructure is easy to refute. The COVID-19 pandemic, with its school and daycare closures driving many parents out of the workforce, has shown how much our society relies on support for caregivers and how disproportionately this burden fell on women, especially women of color. The recent failure of health care systems crystallizes the way in which care forms the basis of the functioning of the economy.

My life depends on the support of caregivers. Without Ady’s caregivers, I would barely be able to leave home, let alone have a demanding career as an English teacher at the University of California, Santa Barbara. The same goes for child care, where we have a support network of wonderful daycare and elementary teachers.

As a caregiver of Ady and our young children and an expert on 18th century literature and media, I have a unique perspective on these interconnected issues. History shows that the economy of care is nothing new and that the term “infrastructure” is just a full word for the kinds of soft support that have made major breakthroughs in the past. Large-scale social improvements have always relied as much on educational and social networks as on physical developments in transport and communications.

Enlightenment Britain was known for its infrastructural improvements. New toll highways and improved road surfaces cut travel time between many places in half, speeding up mail and allowing news to flow faster. Advances in drainage and expansion of canals contributed to the agricultural revolution, reducing hunger and increasing birth rates. The spread of kerosene streetlights and the introduction of gas lamps in the early 19th century made cities safer at night, while covering open sewers made them both more fragrant and more hygienic. .

red carpet event and premiere of
The author and her husband at the premiere of Don’t go quietly, a documentary on Barkan’s activism.

Vivien KillileaGetty Images

But the advances of the Enlightenment – which we still associate with modern values ​​of reason, equality and human rights, despite the fact that it was also the era of movable slavery and the consolidation of colonialism – depended on both human infrastructure and these material changes. . Academies, debate clubs and civic improvement societies are spreading new theories of scientific revolution and town planning. Lounges and correspondence networks circulate literary and philosophical works. Commentators understood that these changes were interrelated: material, intellectual, social and personal improvements were mutually reinforcing. As the Enlightenment philosopher Dugald Stewart wrote in 1792, “all the different improvements in the arts, in commerce, and in the sciences, [were] cooperating to promote the union, happiness and virtue of mankind “and paving the way for” a more enlightened age “.

Although there has been an expansion of schooling, most child care and health care was still done at home. In the past, parents often expressed their feelings about the challenges of what we now call parenting, sleep deprivation and burnout. But they came up with solutions that divide the burden of care onto multigenerational family and friends, rather than seeing it as the responsibility of every nuclear family.

The close-knit Shackleton family of Ballitore, Ireland, is one example. Over several generations, family members, three of whom were principals of Ballitore School, discussed childbirth, early care and education, as well as health issues for many members of their community. . Sarah Shackleton traveled frequently from Ballitore to her sister Margaret Grubb’s home in Clonmel, about 70 miles away, to help Margaret during childbirth and the newborn phase. (Margaret had a total of nine children.) In 1786, after the birth of her fourth child, Margaret wrote to their father, Richard Shackleton, that “Sarah’s company … was a great comfort and support to me,” adding that “when the test time [of childbirth] arrived, she helped me then, and groomed and raised me so much afterwards, that I recovered surprisingly. Sarah, however, denied the praise for her help, writing, “You are hurting me by saying anything to be obliged to me, I often at the time, and since, thought that I did very little to help you in your family.

Understanding home care and child care as an infrastructure highlights our collective need for care support.

Sarah and Margaret also took care of a third sister, Deborah Chandlee. When Deborah faced financial hardship after her husband’s illness, the family came together to support her, with Sarah, Margaret and their brother Abraham each contributing £ 10 a year so she didn’t have to ‘go to the hospital. service ”, that is, becoming a paid servant taking care of others. Margaret also welcomed two of Deborah’s daughters.

In his new book Communities of Care: The Social Ethics of Victorian Fiction, Talia Schaffer details how standard these care arrangements were. She describes the “forms of collective care that made up ordinary life”, adding that “the nuclear family is an exception – a twentieth century twist – in the robust and long-term tradition of collective social life”. In an era before modern medicine and most welfare systems, such arrangements were necessary for survival.

Of course, the community nature of caregiving didn’t mean it was easy. It tended to fall on women and was often extremely exhausting, especially with large families and high rates of infant and child mortality. In 1770 Margaret Grubb, writing a letter while her baby was sleeping, feared that “the best of my days, the bloom & prime [were] dying ”—a feeling that may sound familiar to many parents of young children. But by viewing care as a critical infrastructure, we can begin to recapture some of the benefits of a more collective vision of child care and home care.

Today, our society treats these needs as an individual problem. Parents of young children struggle to find high-quality, affordable daycares and preschools, as only four states and the District of Columbia spend enough to provide universal, high-quality, full-day preschool programs. and six states provide no public funding for pre-K at all, according to the National Research Institute for Preschool Education. As we have seen over the past 17 months, our society cannot function fully without child care. Understand home care and child care as a form of infrastructure – the ‘subordinate parts of a business’, ‘infrastructure’ or ‘foundation’, such as the Oxford English Dictionary defines the term – illuminates our collective need for supportive care, whether it is for children, the disabled, the ill or older Americans.

Today, families are smaller than in the 18th century, and people often live thousands of kilometers from their loved ones. As many people continue to participate in the types of informal care arrangements practiced by Shackletons, we need reliable systems in place to enable women and men to pursue careers, raise families and live fully. . We now have the opportunity to remake our society with caregiving at its heart. History shows us that by doing this we would not be “redefining the infrastructure”; rather, we would assert the structures that have always enabled us to survive and prosper.

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