Ai-Jen Poo was named a 2014 MacArthur fellow for her success in organizing home-based workers. She helped found Domestic Workers United in 2000 and was lead organizer until 2009. Since 2010, she has been director of the National Domestic Workers Alliance, a coalition of fifty-three organizations that advocates for labor protections for home-based workers. She also co-directs Caring Across Generations, a national movement of families, caregivers, people with disabilities, and aging Americans working to transform the way our country provides long-term care.
Poo’s parents were Taiwanese immigrants who moved around the United States following academic jobs. As a child, Poo split time between living with them and living with her grandparents in Taiwan. She attended Columbia University, graduating with a degree in women’s studies and an interest in advocacy work. “It was there that I got involved in the community and on campus and I learned about organizing,” she says.
Her efforts to transform long-term-care delivery address an issue I am especially passionate about. I use a motorized wheelchair and live in a condominium near downtown Chicago, relying on the help of a crew of workers I hire and whose wages are paid by state funds. The availability and scope of such programs vary wildly from state to state, and these programs face constant threats of cuts. People who need the assistance of others often have no choice but to move into spirit-crushing nursing homes.
I’ve been arrested more than a dozen times for committing acts of civil disobedience with the disability rights group ADAPT, whose goal is to change public policy so that no one has to live in a nursing home against her will. Poo and I spoke twice by phone in December about the struggle of homecare workers, the prospects for change, and the state of the movement that is pushing society to value the lives of workers as well as the elderly and disabled.
Q: Who are domestic workers?
Poo: We define them as people who work in private homes supporting families and their needs. That includes direct care workers providing long-term care for people who are aging in place and people with disabilities. It’s about 90 percent women, the majority women of color, and between 30 and 40 percent immigrants.
Q: It wasn’t always your plan to organize domestic workers. You’ve said you just followed your heart. How so?
Poo: I met women who do this work who seemed to me to be the unsung heroes of this country and of our economy. What more important work could there be in a healthy society? And yet we so undervalue it. So I was moved by how important the work was and how important the people who took care of me were.
Q: MacArthur wrote about you, “She spent countless hours in parks, buses, and other gathering places for domestic workers, creating opportunities for these largely isolated women to share their experiences.” What were those early days like?
Poo: Those early days were exhilarating and exciting and really challenging. For probably the first ten years, the work was person by person, talking to the women, having really long conversations on buses about their experiences, doing a lot of listening, encouraging people to move past their fears and come to a meeting.
Q: Tell us about the beginning of Domestic Workers United, the National Domestic Workers Alliance, and Caring Across Generations.
Poo: Domestic Workers United was founded in 2000. It was started by a group of Asian domestic workers who realized there needed to be a voice for domestic workers and that we needed to bring workers together across race and ethnicity to raise standards and to address the lack of recognition and respect for this workforce. In 2003, Domestic Workers United was instrumental in launching a campaign in New York for the first Domestic Workers Bill of Rights. Organizations around the country started to hear about it and wanted to learn more. We decided to form the National Domestic Workers Alliance.
Domestic workers in New York passed the Domestic Workers Bill of Rights in 2010, which guaranteed overtime and off days. After that, states started picking up the banner and passing minimum standards for the workforce. It was also at that time that Arizona passed devastating anti-immigrant legislation.
There was a spread of these state bills around the country. Our members were saying, “If only the country could understand the care and support we provide for so many individuals and families, how could they possibly be wanting deportation and detention to happen?”
Caring Across Generations was launched after a year of listening and designing an agenda that felt like it resonated with lots of different constituencies. It was about reclaiming care as a fundamental value in this country—not the condescending brand of care but the care that values that we are all connected and interdependent.
Q: When your grandfather became ill and disabled, that had a pretty profound effect on you in terms of doing work related to long-term care.
Poo: My grandfather was living at home and his vision started to deteriorate. He had a home-care provider who came a few hours a week but it just wasn’t enough.
Eventually my grandfather had a stroke and he had to go into a nursing home. I visited him there. It was an institution in the worst sense of the word—six people per room. The lights didn’t work. He hadn’t slept. He hadn’t eaten. He was really afraid of the people he was sharing a room with and also the staff.
For him to pass away under those circumstances was incredibly painful. I was in my twenties and I will never forget it. I’m a strong advocate that people should have the choice to live at home and have the resources and support to do that. That the vast majority of people who would rather live at home end up in institutional settings is a huge tragedy that has to shift.
Q: Staying at home is more humane and less expensive. And yet it’s much easier to get Medicaid to pay to put you in a nursing home than support you in your home. Why is that?
Poo: There’s a huge industry behind the system, the nursing home industry. They have an incredibly powerful lobby. They’re standing in the way of progress for sure. But if 90 percent of us want the option to live at home, we have to build a social movement to translate that into political power. We need a long-term care solution that isn’t based on income eligibility.
You can either completely deplete your resources and go on Medicaid, or, if you’re very very wealthy, you can purchase long-term care insurance, and even then it doesn’t cover what you need. Hawaii is going to be introducing the first long-term care social insurance fund in the country. They’re going to be increasing the state general excise tax to create a fund that every citizen in Hawaii could tap into and get a significant subsidy for their long-term care needs.
That could be game-changing for people and a huge breakthrough. We’re trying to do that in five to seven states in the next three years. Most people say in this political environment it’s impossible. I think it’s our responsibility as organizers to expand the realm of what’s possible and to make the impossible inevitable.
Q: I employ a crew of people to assist me at home. They’re paid $13 an hour but in some states it’s barely above minimum wage. Our society often treats these workers in the same hypocritical way we treat veterans. We say, “It’s great what you’re doing. It’s very noble.” But when it comes time to put our money where our mouths are, we don’t do it so well. Why do you think this work is so devalued?
Poo: It has to do with work that has been historically associated with women. It also has to do with ageism and ableism. Our economy is set up so that we value human lives differently. We undervalue the lives of people who are differently abled, who are older, of color, or women.
Q: Recently, home care workers won a victory when the U.S. Department of Labor expanded certain labor rights to cover domestic workers. What was the significance of that?
Poo: About two million workers were excluded from minimum wage and overtime laws. The Department of Labor updated the definition of “companion” so that people who are doing this work can be protected by those same wage and hour protections. It doesn’t mean that the workers will be out of poverty. The wages are still low. But it does establish minimum protections. The average annual income for a home-care worker is about $17,000. About 50 percent of the workforce has to rely on some form of public assistance. The people we rely on to take care of our loved ones or ourselves can’t take care of themselves or their families.
Q: What did it take to make this rule change happen?
Poo: There was a large effort on the part of many, many people—everything from protests to letter-writing campaigns to online petitions to submitting comments during the public comment period. It took years and years.
Q: Some home health agencies and states, like Illinois, have responded by saying nobody can work more than forty hours a week so they don’t have to pay time and a half for overtime.
Poo: Many agencies have a business model that’s based on overcharging individuals and families and underpaying workers, and subsidizing their business model through public funds. They feel threatened that the increase in wages could cut into their bottom line. We have been working really hard in states with disability rights organizations to try to stop cuts and caps. It’s definitely challenging, which is why we prioritize fighting for social insurance. We need a large investment in our caregiving infrastructure so that we don’t have to be pitted against one another as workers and consumers.
Q: With caregiver advocacy organizations, the voice that tends to be missing is the voice of the person on the receiving end of home care. When I see pictures and profiles, the person receiving the assistance tends never to speak up, which can reinforce the stereotype that a person needing a certain level of help is just a passive recipient. Do you think that’s a fair analysis?
Poo: I think historically that has been true. There’s lots of strong organizing in the disability community. So I feel there’s a voice there. At Caring Across Generations, we emphasize that there is an interdependent relationship between the people receiving assistance and the people providing it, and it’s often mutual assistance. We agree that’s something that needs to be shifted in how we think about and talk about these issues.
Q: Let’s pretend it’s ten years in the future. The United States is a model for delivering humane assistance. Home-care workers are treated and paid fairly and those receiving assistance have maximum control over who assists them and how. What did it take to make that happen?
Poo: It will require the millions who are directly affected by the need for care and assistance to be working together, building a broad-based movement for change. All of us will be not only pushing for policy solutions but looking for opportunities to live our values, whether it’s through city or state policy that we can model at the federal level or whether it’s building creative solutions for people leveraging technology so they can live independently longer.
In terms of policy, there needs to be a major public investment in the ability of families to afford the care they need. Right now, people are going broke. There needs to be a rethinking that’s about anchoring the services in the home and community. The level of investment we need to make is similar to that for highways. It’s public infrastructure. ω
Mike Ervin is a Chicago-based writer and disability rights activist.
From the April issue of the magazine.