Ai-jen Poo is the President of the National Domestic Workers Alliance, Executive Director of Caring Across Generations, Senior Advisor to Care in Action, Co-Founder of SuperMajority and Trustee of the Ford Foundation. We spoke to Ai-jen in advance of her appearance at the End Well Symposium on November 16th in Los Angeles.
“Aging and illness are universal experiences, yet more than 53 million unpaid family caregivers—roughly one in five Americans—across the country along with millions of disabled people and aging adults, report feeling isolated, unseen and unprepared to navigate care crises.“
Q: Death is often considered taboo. Was there a defining moment in your life that ignited your passion to discuss and address end-of-life experiences openly?
I was raised in an intergenerational immigrant family and my grandparents played a strong role in raising me. They were important models for my sister and I, teaching us our values, caring for us. When they began to age and need more assistance, we were all engaged. On my mother’s side, my grandfather had a stroke, became paralyzed and my grandmother and a series of care workers enabled him to stay at home. My grandmother was also able to live at home after my grandfather passed away, with the support of care workers and her children. On my father’s side, my grandfather cared for my grandmother at home for many years in Taiwan after she had a stroke, and after she passed away, he lived with my father with the support of care workers until he lost his vision and needed more assistance than we could find at home. Both spent time in nursing homes before they passed away.
While each experience was different, there were common themes – we often felt like we had no agency, that aging and dying happened to us. We simply had to endure in a world of uncertainty and impossible choices. We could never do enough, nor was it ever easy to find the right support. And we never had a vision for how it would go, or even a conversation about how we wanted it to go.
There’s a part of this that is an inevitable part of the human experience – we will all suffer loss, experience grief, have our hearts broken, and at some point, die. And yet so much of the suffering related to aging and dying seems unnecessary – how isolated everyone feels, how hard it is to find the right support at home, how costly it all is, how overstretched and underpaid our direct care workers are. Much of what was hard seemed avoidable, if we as a society made different choices. It made me want to help us as a society make different choices.
Q: Given your unique background, how does your work intersect with the end-of-life and grief conversation — and please give us a preview of what you’re talking about on the End Well stage.
My work focuses on changing our culture and policies to better support caregiving families including care for older adults and people with disabilities.
In the U.S. we don’t have the infrastructure in place to support us to care for the people we love, the people who raised us or the children we are raising. What we have is an over-reliance on overworked, undervalued caregivers — both family members and care workers — who are too often isolated, invisible, unsupported and when it comes to the workforce — shockingly underpaid. So much so that the workforce we count on to care for us and the people we love can’t take care of themselves or their families working in this profession. I believe at the root of that is a deep fear of aging, disability and dying.
Our ability to build the care systems we need, improve jobs for care workers, or culturally value caregivers is directly tied to our ability to embrace aging, disability and dying and design our systems to support quality of life for those parts of life, as opposed to avoiding them.
“So much of the suffering related to aging and dying seems unnecessary – how isolated everyone feels, how hard it is to find the right support at home, how costly it all is, how overstretched and underpaid our direct care workers are.”
Q: In your experience, what is the most significant societal norm or belief about death and dying that needs to be challenged or redefined?
Aging and illness are universal experiences, yet more than 53 million unpaid family caregivers—roughly one in five Americans—across the country along with millions of disabled people and aging adults, report feeling isolated, unseen and unprepared to navigate care crises.
Care work in the U.S. is largely invisible and unsupported because it takes place behind closed doors and because of its roots in slavery. Black women were forced to serve as unpaid caregivers to white families and later undervalued as family caregivers on top of their paying jobs. Many people still think and refer to care work as help, as opposed to the highly skilled and vitally important profession it truly is for millions of workers.
Q: How do you hope various professions and disciplines can come together to create a more human-centered approach to end-of-life care and experiences?
A national care infrastructure that’s universally accessible, reliable and valued will enable everyone to live, work and age with dignity. Public policies — ones that increase care worker wages, and expand access to paid leave, disability and aging care — are critical. But just as important is changing the way that we value care in our country by talking more openly across social media, to our elected leaders, at our workplaces, and through movies and TV shows and in TVs about our care stories, how and where we want to receive care during and at the end of our lives
One way Caring Across is doing this is by bringing together 300 leaders across business, entertainment and philanthropic sector alongside with caregivers and care recipients so we can share ideas and solutions and make care one of the most visible and urgent issues in the U.S.
Q: Fast forward a decade. If the objectives of the End Well Project are realized, how do you envision society’s attitude and practices surrounding the end of life experience.
Everyone will be able to live, work and age with dignity. People will be able to choose where they want to receive care—in an institutional setting or their own homes and communities, and choose a care team that includes a combination of loved ones and professional care workers.
Ai-jen Poo will speak at the End Well Symposium on November 16, 2023.
Ai-jen Poo is a next-generation labor leader, award-winning organizer, author, and a leading voice in the women’s movement. She is the President of the National Domestic Workers Alliance, Executive Director of Caring Across Generations, Senior Advisor to Care in Action, Co-Founder of SuperMajority and Trustee of the Ford Foundation and the author of The Age of Dignity: Preparing for the Elder Boom in a Changing America. Ai-jen has been recognized among Fortune’s 50 World’s Greatest Leaders and Time’s 100 Most Influential People in the World and a recipient of countless awards, including a 2014 MacArthur “Genius” Award.