By Sarah Ngu
Diana A. was sitting in her night class for her Master’s program when she received a cryptic text from her oldest sister. “Call me,” it said. After class ended at 8 o'clock, she dialed her sister right away.
“It’s Jesus,” her sister said to her. “He’s been in an accident. You need to come right now. They’re doing emergency surgery—we don’t know if he’s going to make it.”
As Diana ran outside of her class, she thought of the last time there was an emergency call involving her and Jesus, her older brother. It was two years before. She was living with her fiance at the time, and, after a long night of arguing, she decided she needed to move out right there and then at 1 o’clock in the morning.
She knew exactly whom she could call to help her. Among the six siblings, she had a special bond with Jesus. He was the third-oldest, born four years before her, and he lived ten minutes away in Bushwick with his partner and their four children. Shortly after her call, he showed up, helped her pack, and moved her out. Months later, he would nag her, saying, “You’re so young, you should go out and have fun. Stop crying over this guy.”
When she got to the hospital in Brooklyn, she recognized him despite all the tubes protruding out of his body, but he did not register her. Jesus was in a coma, after suffering massive traumatic head injuries due to being punched and pushed to the sidewalk by someone he didn’t know.
While the surgery was happening, Diana and her siblings decided it was time to inform their parents, who had moved back to Mexico 13 years ago. She said, “Letting them know that their son might not make it… that was the hardest thing to do. I couldn’t do it, I asked my oldest sister to do it.”
The surgery was somewhat successful: The internal bleeding in his brain stopped. But it would take a month before Jesus awoke from the coma, another month before he began to recognize people in his family, and three additional brain surgeries before his skull was finally intact.
When it came time to choose Jesus’ legal guardian, Diana was selected in part due to her previous job as a home health attendant and in part due to her marital status: single. Her two older sisters had their hands full of care-giving, as they were married with seven and five children. (Jesus’ partner was not legally married to him, so she wasn’t eligible for guardianship.) Plus Diana’s English skills were better than theirs, since she was born in this country.
From that day — May 25th, 2017 — Diana put her life on hold. She stopped dating and seeing friends. She neglected her health, leaving laundry piled up for weeks and losing her four front teeth due to stress. She juggled an administrative job at a hospital, for which she was paid $23.34 an hour, with caretaking for Jesus. Her resume states that from May 2017 to October 2019, she cut her work-hours in half. What her resume does not reveal – and what is not counted in employment or economic statistics – is that Diana halved her hours in order to make space for a part-time job: A 20-hour work-week, comprised of uncompensated care for her brother.
Diana is one of many women who perform intra-familial “care work” — the invisible work that goes unremunerated in the economy. The value of unpaid, care work is estimated to be ten percent of a country’s GDP. What would it look like if we, as a society, truly valued “soft work” -- the work performed most frequently by women, which entails caring for our children, elderly, and planet?
Designing a public payment platform to capture undervalued work is the vision behind the Inclusive Value Ledger (IVL), a bill that was recently introduced in the NY State Legislature by State Assemblyman Ron Kim and State Senator Julia Salazar. Through IVL, Diana’s caretaking labor would be translated into spendable credits, accessible over a smartphone, and can be exchanged for other goods and services.
At five feet and one, with long black hair in a pony-tail, Diana seems taller than she is. Her voice carries, confidently and warmly. She describes how when Jesus was in a coma for a month, she was by his side every day, while her siblings stopped by as often as they could. When he was finally transferred back to his home after several months, everyone pitched in, and Diana most of all. She saw him multiple days of the week, accompanying him to doctors’ appointments, bringing him to church, and physically feeding him when he needed it.
She added, “He didn’t let me help him shower, though. He knew he was my older brother, and I think I still owe him that respect. I don’t want to take that away from him, because a lot of things were taken away from him.”
For the first year after his accident, Jesus wore a helmet to protect his exposed scalp while awaiting the surgeries he needed. His siblings did not want to risk anything happening to him during a subway ride. After bleeding thousands of dollars in cab fares for a year, Diana bought a used car for $2,000, which she still uses to transport Jesus to the doctors. He’s had ten seizures over the past two years. Most Saturdays, she drives Jesus around just to give him a chance to be outside, as he was always very active and hates being confined indoors. “Last time he asked me to drive him to the cemetery,” she said. “It’s his new hobby—visiting cemeteries.”
Jesus was the breadwinner for his family, and his partner was too busy raising their four young children to work. So Diana and her siblings were on the hook to pay for the expenses of Jesus’ family, from medicine, to rent, to groceries and school supplies. Over the next two years, Diana would rack up over $15,000 in credit card debt. Her credit score plummeted from 750 to 590, which led to higher premiums for car insurance.
“If the government would be able to do that and acknowledge the pain, suffering, and depression that people go through—it would help a lot of people,” she said.
Diana receives a tax credit for her Master’s education. However, she can only access that credit after she files her taxes. Like many people, Diana needed money now, not later, to pay for urgent bills. The ability to patiently wait for a tax credit is a luxury, available to people who aren’t living paycheck to paycheck.
The Inclusive Value Ledger (IVL) legislation will give all New Yorkers the ability to access their tax credits in the form of digital credits upfront, before they file their taxes. People can exchange their credits for goods and services at any participating vendor (e.g. grocery stores, taxis). Giving people quick access to funds lowers their need to rely on high-interest credit cards.
Last month, Diana returned to her paid job full-time. Despite the seizures, Jesus was getting better. “And I needed the money,” she said.
She has begun to re-prioritizing herself by reconnecting with friends, going to the gym, looking for a talk therapist, and seeing a physical therapist to treat the sharp pain in her back, a result of the accumulated stress and tension. The last time Jesus needed a follow-up appointment, she asked her oldest sister to accompany him, as Diana can’t afford to take any more time off from work. In addition to her credit card debt, which requires monthly payments of $500, she owes $35,000 in student loans. That’s why she occasionally takes on side jobs with a personal injury law firm.
“It would be a blessing,” she said. “If I can pay off some of my bills, I would be totally grateful.” She acknowledged that she was lucky that she had the support of her siblings. This legislation (IVL) would be especially helpful for people who are alone, she said.
When she reflected on the past two years, Diana said, “I’ve blocked out so many things.” Research shows that caregiving for an ill relative has “all the features of a chronic stress experience,” which compromises the caregiver’s health and often leads to depression. Diana acknowledges now that she did fall into a depression, sleeping for five hours during the day on weekends, and withdrawing from everyone except Jesus and the siblings with whom she lived.
Part of what fed her depression was the feeling that her labor was taken for granted. “Diana will be there,” “Diana will take care of it,” was her family’s default response whenever Jesus needed help.
“At one point I was upset—because there were a lot of things thrown at me,” she said, her voice starting to crack. “You know, I feel I have a life too.”
She recalled last Thanksgiving when she showed up to help serve dinner at a CDC shelter in East New York, for which she serves on the board. One of her fellow volunteers said to everyone, “Diana’s brother is sick, and she is still here, supporting the community.”
When she heard that, Diana almost cried. It was the first time that her sacrifices and labor in caring for her brother were publicly acknowledged. Of course, she cared for her brother because it was her duty, not because she wanted acknowledgment. But it was hard being the “strong person” whom her family relied upon.
“It’s not just me, my oldest sister feels it too,” she carefully said, before elaborating, “But you cannot be weak. You’ve got to be strong. You cannot let your emotions, I don’t know why they are coming out now—”
She paused, letting her tears flow, before continuing, “But you have to be the strong person, provide, and be there to help your family, help your brother.”
Compensating care work is about helping people pay bills, but it’s also about much more than that. It’s about creating a reality where all work is acknowledged and supported, so that no one has to be a hero or martyr. It’s about shining a light on work that has, for so long, been rendered invisible, and acknowledging it as some of the hardest, and most important, work one could ever do.
To find out more about the Inclusive Value Ledger and the movement behind compensating care work, go to inclusive.money.