My Disdain for the Word “Caregiver”

Since I can remember, I’ve hated the word caregiver. This past week, I found clarity in my source of outrage through an episode of Ester Perel’s podcast, Where Should We Begin?, titled “I Don’t Want to be Your Caregiver, I Want to be Your Wife.”  This powerfully emotional episode shares the story of a couple in which the husband was diagnosed with early-onset Parkinson’s Disease and the wife finds herself burned out on care-giving for 3 young children and her husband.  The title of the podcast summarizes the episode in a line: this couple had difficulty transitioning roles after the introduction of chronic and degenerative illness. There was a moment in the episode that the wife remarks that when she said in sickness and in health, she meant it. It’s not as though this woman wanted to back out of the relationship. But, she did want to remain a partner – a wife – rather than solely serve as a caregiver.

This episode resurrected my mounting disdain for the word caregiver and motivated me to explore my frustration further.  Whether it’s used to describe a partner, parent, child, or loved one, the label of “caregiver” essentializes the role of that person as a care provider. In reality, the loved ones who provide care are rarely just caregivers, instead we are partners, parents, children, and friends. The label of “caregiver” limits these roles to a sole feature, which minimizes the far more complicated ways care providing becomes intertwined with our other relationship roles.

Before I proceed with my diatribe, I want to highlight that “caretaker” isn’t immune from my frustration. Caregiver and caretaker are basically identical. Though I must point out the artful irony that “give” and “take” are opposites, while “caregiver” and “caretaker” mean the same thing. I flag this amusing paradox because there’s truth in this wordplay: we are all care givers and takers.

I’ll also add that by most accounts, I have been both a caregiver and a care taker (not caretaker).

A few years back, my mom suffered from a severe brain infection. After intensive brain surgery and a Christmas spent in the ICU, her recovery included extensive OT, PT, speech therapy and more. I quickly transitioned from my primary role as daughter across the country in her first semester of graduate school to serving as my mom’s power of attorney. I worked with doctors, social workers, nurses; argued with insurance companies; coordinated appointments and transportation; managed finances, filed for disability benefits, and facilitated various forms of long-term care. My mom has had the good fortune of recovering much of her prior functioning, and I have since transitioned in and out of a care providing role. I no longer pay her bills, but I call almost every day to check that she’s well and taking care of her responsibilities.

While I continue to transition in and out of a caregiving role with my mom, I also transition in and out of a care taking role with my partner. My disability places my partner in the position of helping me, a lot. To name a few of the countless ways he makes my daily life easier: he drives me places, reads anything and everything for me, and generally serves as my eyes. I need a lot of help navigating the sighted world, but I am not a damsel in distress. I am a progressive feminist striving to achieve an egalitarian relationship. You may be wondering how my partner and I traverse this dynamic. The answer is simple: we see each other as equals. We provide care for each other, and we take care from each other. As much as he helps me with my visual limitations, I help him with his (nonvisual) limitations. I remind him about important dates, make phone calls on his behalf, and organize our travel and social calendars. We do these, and countless other things, for each other. This is not because he is my caregiver or because I need to compensate for his generosity. We love each other, and we are partners, which means we provide care when it’s needed.

Relationship roles are dynamic. At times, my mom served as my caregiver; at times, I served as hers. Some days my partner will be more of a caregiver, some days I will. The word caregiver presumes a static role, when the reality is that we more fluidly move in and out of care giving and taking.

While I hope I’ve made the case for complexity in care giving and taking, I also want to acknowledge that the balance of care giving and care taking takes many forms. I cannot pretend to understand what it is like to be in a chronic, more labor-intensive care giving role. The heartache experienced by parents, spouses, and children while caring for loved ones with terminal or degenerative illnesses can be profound. As much as I believe most relationships fundamentally involve care giving and care taking, there exists notable variability, and I certainly do not wish to undermine the generosity and selflessness of many who provide care for loved ones.

I wish I had an elegant solution to replace the (mis)use of caregiver or caretaker. Saying “partner who provides additional care” is wordy and cumbersome. Though, perhaps, the solution isn’t in a word or a phrase, but in bringing additional nuance to the concept. We will, most likely, all fill roles of care givers and takers, and these roles do not encapsulate one’s identity or relationship. Instead, providing care is only one facet of relationships that are always far more complicated.

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I want to acknowledge my dear friend, Alice Hua, who flagged Esther Perel's podcast episode and discussed these ideas with me. 

What is the worst part of having low vision?

A few weeks back, I was introduced to a fellow graduate student experiencing progressive vision loss. We connected in a familiar unfamiliar way: the intimacy of strangers with shared experience. After obligatory icebreaking conversation about our research interests, professional pursuits, and hobbies outside of academia, we dived deep into discussing our experiences of vision loss.

The conversation turned to the question, “what is the worst part of having low vision?” She answered first, explaining that independent navigation has been the most challenging. Despite advances in public transportation accessibility, in ride sharing services like Uber and Lyft, apps that provide turn by turn walking directions, it’s still much harder to get around independently as a blind or low vision person.

She then asked for my answer. “All the social stuff. Faux pas and isolation.”

Pleasantries and humor begot intimacy. We laughed about embarrassing stories of spilling and tripping and miscommunicating and misunderstanding. We both had an arsenal of humorous stories about walking up to strangers thinking they were our friends, and our friends thinking they were strangers.

The vulnerability under the humor was palpable. We shared the discomfort in transitioning from socially skilled to painfully awkward. We described moments when we realized we were different, and we knew we were being judged by those around us.

I confided, “and I want to scream that I’m not awkward or insensitive! I just can’t see!”

She challenged me, “the thing is, if we behave in a way that is awkward and insensitive, even if it is because of low vision, others perceive it just the same. It’s as if loosing my vision has made me awkward and insensitive. And there’s nothing to be done about it. Because others’ perceptions of us define us. It’s self-fulfilling.”

As we sat in the heaviness of that observation, I was flooded with concern over how differently others’ perception of me is from my own perception of myself. When I initially shared that the social stuff is the hardest part of vision loss, I hadn’t extended that to the characterization of my identity. I always viewed myself as socially skilled but trapped in a body forcing my social awkwardness. But, my body is me. I’m not trapped: this is who I am.

As our conversation transitioned back to levity, commiserating about the typical woes of graduate student life, these ideas stayed with me. 

Others’ perceptions of us shape us, but do not define us. Indeed, I may be more socially awkward now. But I am not defined by all the beliefs others have about me. Some people believe I am less capable, less deserving, or less worthy. Most days I know these beliefs are unequivocally untrue. But it would be dishonest not to acknowledge that some days, I doubt myself, wondering if there is a kernel of truth to these beliefs. 

Now my answer to "what is the worst part of having low vision?" has changed. It's still a type of "social stuff," but it's more fundamental to my identity. The hardest part of my vision loss is the changes in others’ perception of me - my social skills, my competence, my capabilities - because others' perceptions have the power to make me question myself.

Checking My Privilege, Carrying On

I recently watched Dave Chappelle‘s Netflix special, Equanimity, in which Chappelle responds to criticisms of his jokes against transgender people. Admittedly, I was one of the many who took incredible offense to these jokes.  In his response, Chappelle comments that there is a privilege to even caring about the feelings of people who are trans. He suggests that these jokes wouldn’t cause uproar if transgender identity was limited to blacks, Hispanics or women. His contention being that, historically, no one has defended these groups when comedians make jokes about them. But, when the issue affects those of power and privilege, namely white men, the issue becomes important.

I still take issue with Chappelle’s remarks about transgender identity, and yet, his contention about the role of privilege in civil rights advocacy stuck with me. I write about my encounters with adversity, despite the ways in which my whiteness, cis-gendered female identity, education, heterosexuality, and class have facilitated my use of my voice. This blog is the product of privilege. I have privilege in my ability status. The development of my disability in my late teenage years provided me the opportunities of an able-bodied childhood.  I attended mainstream public schools and played on local sports teams. I have privileges of education and access to an elite culture; I listen to NPR and shop at Whole Foods). I am steeped in a culture that prioritizes authenticity. This cultural privilege forms the foundation for me to speak my truth and expect others to listen.

Beyond an immediate recognition of how my privilege affords me the opportunity to share my story, I reacted to Chappelle’s response to the uproar about his transgender jokes by thinking, “who am I to vocalize thoughts about adversity? I haven’t had to overcome much of anything compared with most people. Isn’t it a privilege that I think others should hear my plight, albeit minimal, and take action?”

I considered silencing my story; we need space for the voices of those who have really had to overcome. We don’t need another educated white girl pontificating about her struggles.

But then, I reflected on my observations of effective civil rights advocacy.  The most profound example of a civil rights shift in my lifetime has related to the rapid expansion of gay rights. Within twenty years, homosexuality went from being a diagnosable mental illness to being celebrated in the media (Modern Family or the L-word, anyone?). For this change to take place, LGBTQ people had to tell their stories.

These stories were heard. People listened to the stories of their friends, family, and neighbors all sharing about their experiences. Importantly, people with sufficient privilege and power to make changes heard these stories.  When privileged white (gay) men were beaten and killed, or prohibited from marriage rituals, people with power cared.

I close by acknowledging the inherent privilege that leads me to write this blog and use my voice to share about disability rights. I could keep quiet, knowing that my struggles pale compared with so many others. But instead, I don’t think representation of people with disabilities will change without more people using their voices to share their stories. To use Chappellian logic, perhaps it is my privilege that serves as a vehicle for my advocacy.