Caring to the Bone: Healing From Coercive Care 

What follows is the transcript of a two-episode podcast series on caregiving that follows the author’s experiences as a caregiver to her elders to what she hopes caregiving can be now as a graduate student and future researcher. 

Episode I | In My Bones: Feeling Coercion

Thank you to the Community of Scholars Program (COSP) at the University of Minnesota for making this podcast possible. And thank you to the folks at SPARK for working with me on this piece. SPARK is an eZine that was initiated by the COSP Writing Initiative in 2020 to amplify the research, experiences, and voices of BIPOC graduate researchers. I hope you enjoy listening to my experiences and research on Asian American caregiving. 

What does caring look like in your life? Who or what do you think about? Your friends? Your family? Pets? When did you learn to care? You’d probably have a hard time pinning down a particular moment you “learned” what it means to care. But then, what do you mean by care? Do you mean the emotion? The action? Can either even be separated from each other? After all, how could someone physically care for someone else, if they didn’t also emotionally care? 

My name is Shania Kuo. I’m Taiwanese American, a Ph.D. student in sociology, and former caregiver of over 10 years for my grandparents who were immigrants from Taiwan. Being a caregiver has been an important part of my life, but, as both my grandparents have passed, I’ve realized how my caring has deeply shaped my identity and my relationship with caring beyond just providing it to others. Because what does it mean when the caregivers need care? Who can provide us that care? 

My mother came to the United States from Taiwan when she was a young girl with her family. She was born in 1962 and during this time, the Guomindang, the nationalist government who moved to Taiwan after losing the civil war in China, had spent over a decade maintaining martial law on the island. Eventually, my mother and her family left Taiwan, moving to New York in the hopes of a better life. But after a falling out with her family, my mother left for California to start her own family. We grew up for a time in Monterey Park, the “Little Taipei” of America. But, instead of the abundance of opportunities the land of gold was supposed to provide, there were only hard times. Out of desperation, my mother took my older sister and me to New York to live with and care for my grandparents, leaving my college-bound brother in California to finish his studies. To provide care to others, our family was split apart. 

I don’t actually know much about my grandparents. For as much as I provided care for them, they often felt like strangers to me, silent about their lives. But, as unknown as their lives felt to me, I became intimately familiar with their decline. When I was younger, there would be a blaring TV with Japanese talk shows, remnants of the legacies of Japanese imperialism in my family, and the sound of oxygen machines as I went through middle and high school. The sound of the hosts’ laughter often felt mocking to me, constantly buzzing in my head as my grandparents were the only ones who could watch the TV and make their presence known in the house. With both of them gone, questions keep rising in my mind on what should happen next. Where do we go from here? 

I thought life after caregiving would be easy and peaceful, but now I’ve realized that as much as caregivers give, there’s little we receive in return. The inattention to caregivers is not just an individual problem, but a structural issue embedded in coercion. Evelyn Nakano Glenn, in her book Forced to Care: Coercion and Caregiving in America describes coercion as the “physical, economic, social, or moral pressure used to induce someone to do something” (Glenn, 2010, p.7). Being a woman and caregiving isn’t just seen as something natural, but an obligation women have to do, especially for low-income women of color. This idea of obligation coerces women to take the mantle of caring for family members, and coercion has been a formative part of my research.

This framing of care as coercion has both brought me to study caregiving and also want to imagine more for it now. But, when I was younger, I had no way to vent out my thoughts and frustrations with other people. And so I wrote. Sometimes short stories. Sometimes longer stories. Many times they were fragmented thoughts, especially after more emotionally charged events. I hid these little entries in various flash drives with names like, “Homework Story English.” Reading through my entries years later, aspects of my life have mapped onto the aspects of care as coercion that Glenn defined. Disappointment, resentment, exhaustion, and melancholia, these four emotions came to define my life as a caregiver. 

“Mommy and I got into an argument. I’m so tired of taking care of everyone. I don’t want to do this anymore. I asked her what she would do if I ran away or just disappeared. She asked me, ‘Then who will help me with everything?’ Am I her daughter or am I just another hand to help out? Would she be sad or just frustrated?” 

Our argument took place in middle school, when my mother was having a particularly difficult time adjusting to the labor-intensive circumstances of caregiving. Although she attempted to provide care alone, I had no choice but to help as her health declined. But our relationship was becoming increasingly strained as we faced pressure from family and healthcare providers to do more, and more, and more, until there was a point we could barely give anything for ourselves, much less to each other. I was disappointed that my mother didn’t feel like what I thought a mother would be like. When I spoke to my mother about how tired I was, we exploded. From that point on, I don’t think our relationship was ever the same. 

“Those old people get all of mommy’s attention. I think she knows more about them than she ever bothered to learn about me. No one cares about me here.” 

The emotions around caregiving are complex and changing, moving from acute pain to dull ache. My mother and I were always a little awkward around each other, but I had hoped with time, everything would get better. But when my mother said that to me, I felt betrayed. At that moment, she wasn’t looking at me, Shania. She wasn’t looking at me as her daughter. Our relationship had been commodified, so that I was simply another caregiver. My mother, in feeling obligated as a daughter to her parents, quantified our relationship to that of how useful another pair of hands would be. And I followed along, because that was the coercive power of care, and I had no choice but to follow its demands, disappointed or not. 

In my freshman year of high school, I joined a number of activities, like choir. I hoped my mother would make it to watch, but she only ever made one or two. Eventually, I stopped most of my activities, if not all of them. I had to be there to take care of my grandparents too, after all. These activities were just extra things to do, and I needed to “care more” about my family. Good Taiwanese daughters didn’t get mad. They always knew caring for others was for the best. 

And with burying my disappointment, resentment soon simmered alongside it. I became resentful of my role as a caregiver, I became resentful of my family, and I became resentful of what caregiving did to my family. If I wasn’t a caregiver, would I have been able to live as freely as my peers? Would my mother be able to see that we’re not children from a decade ago? Would she not be as alone as she is right now? Would she have had friends she could talk to? Would my mother have spoken to me more? It felt as though time was being taken away from me and my mother, time with each other, time for experiences, time to be a kid.

By the time I entered my senior year of high school, it was a slow trudge to the finish line. There would be no victorious sprint at this crossing, not even a desperate and dramatic crawl towards it. Just a fall and faceplant to the end. My mother’s body and my body had been whittled down, finances whittled down, all of it whittled down. Watching my grandparents wither away, we should have just let them go instead of letting them feel their body fail little by little. By the time my grandfather passed after my grandmother, there weren’t any tears, no catharsis. It all ended in a quiet whimper. 

“Sometimes I wonder if life would be better if I just got a job instead of doing this Ph.D. Maybe not for me, but for everyone else. My siblings are all fighting with each other and with mama. Where is she going to go now that they’re [my grandparents] both gone? I’m trying to save money just in case I have to take care of her, but I don’t make enough to look after her. I feel like I’m not being a good enough Taiwanese daughter lol. We’re not American—like white people. We can’t just leave her. But, what do I do? What can I even do?” 

But as life moved on, it felt like my mother never did. In fact, I realized I’ve never really known how she felt. Did my mom feel disappointment and resentment in her life as well? She always told me that we had to be grateful, no matter the circumstances. She spent so much time caring for my grandparents, her children became peripheral and static, and she became a mystery to me. Our conversations were always the same because she couldn’t remember what she said last. Most of the time, my mother struggles to speak and string words together, not because she lacks the intelligence, but because she lacks the experience. Over a decade of caregiving isolated us from forming any community with others, especially in the predominantly white suburb we lived in. I escaped, my mother did not. Most days, especially with my grandparents gone and with it daily communication with medical personnel, unless my siblings and I call her or someone visits, my mother is simply silent. And even when we talk, our conversations often consist of her repeating things she heard from the various shows she listens to. She never really engaged with anything we had to say, just “mm” and “okay.” There are no friends for her to call. No people willing to talk to her. Only the sound of her talk shows and mandarin dramas.

This text conversation I had with my friend was a realization for myself that post-caregiving life isn’t as peaceful as I thought it would be. Having been a full-time caregiver, my mother doesn’t have the financial means to live on her own. But taking care of her has proven to repeat the cycle of caregiving– only none of her children are in the position to provide for her. Our relationships have all been strained, tempers are short when we talk with each other, and my mother’s idea that silence will fix everything, that “if we don’t talk about it, everything will be fine,” only exacerbates the issue. But still, it’s not like we can just walk away from her. As strained as our relationship has been, she’s still my mother. Good Taiwanese daughters can’t just “walk away.” 

But as much as I don’t want to walk away, I feel like I’m constantly juggling between what I want and what I want because of the culture I long for. David Eng, author of Racial Melancholia, Racial Dissociation: On the Social and Psychic Lives of Asian Americans, described how in a podcast interview with NPR, “Processes like immigration and assimilation, which are never complete, they put immigrants and Asian Americans along a continuum where they can never quite mourn or get over the losses of homeland, of language, of culture” (2019). 

And in this way, caregiving has encapsulated this feeling of a loss of culture for me. Caregiving commodified me, my mother, and my grandparents to be unrecognizable to the tradition of caring I grew up imagining. For most of Taiwan’s history, outside of recent globalized capitalist caring market developments, caring for your parents was a deeply important part of familial culture. I long to be a “good Taiwanese daughter,” but I don’t feel close to my mother. She’s in her early sixties now, a senior who is supposed to be near retirement. Instead, she’s working as a home aide worker. 

I’m pursuing a Ph.D. because I love research and sociology, but I also wonder if prioritizing my career choice over my family makes me a horrible daughter. I feel like I have to choose between my cultural upbringing and the commodification of caregiving or continuing down the “selfish” route I chose and failing to help provide for my family. But, I also fear giving up so many aspects of my life for another period of caregiving. My siblings can’t agree on what to do. I don’t have the funds to come up with a solution, and my mother keeps her plans to herself, existing in a silence slowly choking her children’s relationships. I don’t want to be like those selfish  (white) “Americans,” ungrateful for the sacrifices of my mother. But I also don’t want to be a caregiver anymore. Taiwanese or American, but it seems like not both, what can be the “right” path? 

[transition] 

In the next episode, I explore more of how my life after caregiving has changed and the legacy caregiving has left on me. I consider what it means to imagine care that isn’t coercive, and instead, if we value care as a crucial part of our culture. See you then. 

Episode II | Out From My Bones: Creating A Culture of Care

My name is Shania Kuo. I’m Taiwanese American, a Ph.D. student in sociology, and former caregiver of over ten years for my grandparents who were immigrants from Taiwan. In the last episode, I spoke about my experiences as a caregiver through the emotions that came to define my experiences: the disappointment, the resentment, the exhaustion, the melancholia. In this episode, I want to build on where I left off. Instead of care as just a coercive structure in place, I want to imagine what it would be like if we valued care as  a critical part of our culture and daily lives. If we think about care differently and instead establish a culture of care. 

Up until this point, I have discussed care as coercion because for much of my life, care has been a coercive, a commodified task and feeling in my life. But, I also can’t accept that caring can only be reduced down to coercion. That our feelings must always be tied back to structure and reduce our agency to nothing.

I think often about my late best friend.  She was diagnosed with pancreatic cancer in our junior year of high school. Her family and I held onto hope that maybe, just maybe, she would be one of the lucky ones who survived. But months passed, her body no longer responded to treatment, and in my senior year of high school, my best friend was preparing for the end of life.

And it was slow torture to watch my best friend wither away. Almost every day I visited her, taking physical care of her alongside the nurses as she lost the strength to move. Physically, she lost her hair and her body mass, aging her almost unrecognizably. The hours she spent awake dwindled and sometimes, the entire time I visited, she never stirred. But it was the pain of seeing her so quiet that hurt the most. Of the both of us, my friend was the extroverted, fun, upbeat personality. And now, I was the one hopelessly trying to cheer her up, trying to describe a future we both knew she would not be part of.

No one asked me to care for her the way I did. 

But I cared for my friend. I cared for her because she was my friend, my best friend. I cared for her because I didn’t want her to be sick and scared. I cared for her because she was there for me when I needed her the most. I cared for her because I didn’t want her to die feeling alone. I cared because I wanted as much time as possible because I knew there would be a moment where I had to let her go.

When I was heading to a summer program as part of my matriculation requirement for my undergraduate college, I wouldn’t have access to my phone during the weekdays. So before I left, I paid my friend a visit and told her I would be back in a month. She seemed the most coherent I had ever seen her, and I felt as though we were both in good spirits when I left. 

She died a week later. I didn’t find out until the week after. 

I begged my school to let me go back. To let me attend my friend’s funeral. But I was told it would “put my matriculation in jeopardy,” a statement I would later learn was a lie. As a first-gen, low-income student, I felt trapped between my feelings and the “logical” choice. And I chose that “logical” choice, leaving me with questions I never found the answers to.

Was she in pain when she died? Was she scared? Did they give her the pillow she loved to hug? Did someone hold her hand until the end? Was she thinking of me?

To look at this sociologically, perhaps I would focus on how I had to take time away from my studies to care for my friend because her parents had to work so much. And they had to work because of the exorbitant costs of what should be fundamental rights, like healthcare and education. Maybe focus on the circumstances that drew them away from their daughter and the institutions that made it impossible for us to care for her together. But then the anger settles in. What about the violent institution that lied to me, that denied me the chance to send off the person who had always cared for me and the closure I sought as a caregiver? The care I gave my friend was not what left scars on my bones, it was the violence of the system that prioritized my ability to produce and devalued my care. 

I’ve always cared for myself alone, because that’s all I know how to do. Speaking up, asking for help and accepting help from others, accepting that I, the caregiver, needed care too, was unimaginable. For over 10 years, my entire life had revolved around giving care to others. That was what I grew up thinking gave me value as a human being, that it was all I could ever be.

To acknowledge a culture of caring means to acknowledge the dignity of care and the relations between caregivers and care receivers. But since the end of my role as a caregiver, my own health has declined. While my grandparents were alive, I stayed silent through the pain. Being silent was all I ever knew; it was how I thought I showed people I cared about them. But as I’ve left my role as a caregiver, the physical toll of caring for so long without care back has left its mark. I often struggle to walk around campus for less than half an hour at a time, and many times I need some sort of mobility assistance. Some days I can’t even get out of bed because of the pain and exhaustion radiating through my body. Poor interactions with healthcare providers over the years have led me to go through a variety of treatment plans, often leaving my concerns brushed off and my symptoms worse than when I first started. But despite the pain, I keep a smile on my face, I don’t use my cane, I don’t tell people just how bad I feel. Because I know how uncomfortable people feel when I do, and I can’t help but care more about them than I could for myself.  And I’ve always cared for myself alone, because that’s all I know how to do. Speaking up, asking for help and accepting help from others, accepting that I, the caregiver, needed care too, was unimaginable. For over 10 years, my entire life had revolved around giving care to others. That was what I grew up thinking gave me value as a human being, that it was all I could ever be.

When, one day, I had to ask my friend, “Can you bring me something to eat?” because I couldn’t cook, I felt the smallest I’ve ever been because it was something that was supposed to be simple. I was supposed to be the strong, independent friend who they could rely on. Asking my friend to instead care for me felt antithetical to that image and my sense of self. In my mind, I became like my grandparents, stripped of any dignity and pride. But in spite of that, my friend stayed with me and reassured me that this was what friends do. For me, where caregiving had primarily been a transactional relationship based on cultural standards I could never meet, mutual benefit, prolonged suffering, and resentment, upon hearing the words, “I just want you to be okay because I care about you,” hurt. Because for as much care I’ve given to others in my life, I’ve never heard those words for me. Always caring for the sake of others, always trying to be a “good Taiwanese daughter” and never Shania, somewhere along the way I forgot that I needed someone to care for me too. 

Glenn’s framework of care as coercion introduced me to the sociology of care, caregiving, and care work. But as I grow into this post-caregiving life, although long-term health, personal, and financial difficulties have emerged, it feels wrong to say care can only be coercive. Yes, we as individuals shouldn’t have to bear the burden of care. There should be systems and policies in place that help make my life easier without requiring others to go out of the way for me. But my friend didn’t help me because they felt like it was an obligation. They didn’t help me hoping it’d be an investment where I’d “pay them back” later. They took care of me because they simply cared. 

Care is a slow, thoughtful, emotional process that runs counter to the speedy production of capitalism. If we want to address structural issues, we need to care about and for each other. And we can’t just view it as a structural issue rooted in coercion. We need to see each other as human beings with lives, feelings, and emotions, and create a culture where we care. It can and should also be viewed as healing. My research focuses on inequities of caregiving and scholarship on the coercion of care has been an important foundation that led me to study caregiving in Asian American immigrant families. But I want to go beyond just viewing care as an issue caused by structural forces. I want my research to break the silence. I want it to speak with the voices of both caregivers and care receivers and the healing possibilities of caregiving. Because when we only view care as having issues, if we can only see what’s wrong with it and never support caregivers in breaking their silence, how can we ever bring ourselves to actually care? 

Thank you again to the Community of Scholars Program (COSP) at the University of Minnesota for making this podcast possible. And thank you to the folks at SPARK for working with me on this piece. A written version will be on the SPARK website, and I encourage you to read the other pieces in this issue the SPARK editorial board and other contributors have worked so hard on to create. Thank you for listening, and take care of yourself and others. 

References

Eng, D.L., Han, S. (2019). Racial melancholia, racial dissociation: On the social and psychic lives of Asian Americans. Duke University Press.

Glenn, E.N. (2012). Forced to care: Coercion and caregiving in America. Harvard University Press.

Music Credit: ‘A Kind Of Hope’ by Scott Buckley – released under CC-BY 4.0. http://www.scottbuckley.com.au