Voicing Vulnerability: On Embracing Identity from an Academic with Low Vision
This blog broadly addresses the challenges faced when trying to embrace individual identity. I share my own experiences, news articles, scientific findings, and blurbs from social media about overcoming ableism (and the the "isms:" racism, sexism, agism, etc) to live compassionately and authentically.
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
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
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
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.
I want to acknowledge my dear friend, Alice Hua, who flagged Esther Perel's podcast episode and discussed these ideas with me.