Wednesday, June 13, 2018

A Reminder that Anger is Justified

The exciting buzz in my home academic department is that we’ve moved to a shiny new building. We’ve ditched the dungeon for a swanky open-space layout equipped with standing desks and abundant natural light. Walking with a couple of my friends, the topic of the building’s accessibility came up. We took turns pointing out design elements that limit access.

“None of these signs have Braille.”

One of my able-bodied friends commented, “I worry every time I walk down these stairs because there aren’t any depth cues. And they’re so slippery.”

“There aren’t automatic doors to many spaces. How could someone with a mobility impairment get around?”

“With an open layout, sound carries. Ambient noise will make it impossible for those with hearing loss.”

“Everything looks the same! It’s so easy to get lost!”

As we wandered through the stunning spaces, we found ourselves nitpicking the many ways the building has its shortcomings. My immediate affective reaction was a tinge of gratitude and pride at how woke my friends have become to access needs.

But my friends felt very differently. “This is infuriating! How do they design a fancy new building and not consider accessibility?” They were outraged, declaring this unacceptable.

I found myself defending the well-intentioned faculty behind the building plans. “I understand it’s hard to accommodate every form of disability. There are a lot of considerations to take into account.”

My friend retaliated, “okay sure, but mobility, vision, and hearing. Those big three deserve attention.”

Another friend added, “and now is the time, rather than retrospectively updating the building!”

They are completely right. Their sense of injustice and fury highlighted how easily those of us with differences in ability become complacent. Our complacency stems from a lifetime of being unable to access the same spaces, material, and opportunities. Despite my outspoken nature, I too have succumbed to learned helplessness as a result of living in an able-bodied world as a person with a disability.

I found myself reflecting on a building planning meeting months ago. The facilitator asked about additional concerns that may not be on the forefront of people’s minds. I instantly thought about inclusion and accessibility. But, I said nothing. I didn’t want to sound needy or dissatisfied. I didn’t want to draw attention to myself. I didn’t want to be the voice representing all people with disabilities. At the time, I silenced my voice as to not inconvenience the majority. Looking back, I regret my silence. Now, for the umpteenth time, future generations of students will be plagued with the challenge of navigating yet another space with limited accessibility.

Scrutinizing the new building, discovering missed opportunities for greater access, and hearing my dear friends’ reaction reminded me to reinvigorate and mobilize my anger in an effort to promote social justice.  All new buildings, especially on a college campus, should be fully accessible to those with differences in physical ability. My resulting embarrassingly cheesy mantra: when access is denied, anger is justified.

Thursday, May 10, 2018

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.


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