A Life Worth Living: An Elegy For My Mother

Close up of three hands. An elder's hand lays between the hands of a younger person's two hands. All three fair-skinned hands rest on the younger adult's lap.

CONTENT NOTE: discussion of systemic ableism, death, end-of-life care, and euthanasia

My mother and I were always a team. When my Girl Scout troop had a roller skating party, my mom strapped skates to my feet, took hold of my waist, and wheeled me while I twirled a glittery baton. When a dance class for children with disabilities was formed in my town, she was among the first to enroll her one and only rugrat.

When I got older and told my mom that I wanted to attend the University of Virginia for my Master’s degree, she packed us up and off we went to Charlottesville. Two years later, we were on the road again—this time to Knoxville—so that I could complete my doctorate at the University of Tennessee. By this time, I’d become largely bedbound, and she was my principal caregiver.

My mother spent her entire adult life fulfilling a promise she made when I was diagnosed with rheumatoid arthritis at two. She vowed that my world would be as full as any other child’s. RA would not deprive me of the opportunity to live a rich, rewarding life, even if that meant we had to do things a bit differently.

Last winter, it was my turn to fulfill a promise, my turn to follow the example that my mother spent four decades cultivating. My mom experienced a severe stroke, affecting the entire right hemisphere of her brain. The news of her diagnosis was accompanied by a grim forecast of the future we could expect for her. 

She would not be coming home, her medical team declared. She would be reliant on a trach and feeding tube, they said. If she survived, she would spend the rest of her life in a long-term care facility. In the absence of an advance directive or living will, they informed us, we would soon need to make some difficult decisions about “the kind of life she would want.”

The next days were a haze of shock, grief, and fear. They were also a time of unexpected, if covert, conflict between her medical team and we who knew her best. The battle had begun to determine who would have the right to decide what Mom would deem a life worth living. It was a contest between the authority of the medical experts and the authority of familial love and experience.

But I already knew what Mom would have wanted. I learned it from my mother’s words as well as her deeds. She both raged and wept at stories of the termination of life support or the withdrawal of nutrition and hydration for severely ill or injured persons on the grounds that their quality of life was no longer tolerable. We discussed it a thousand times—in the context of our personal lives and in the context of my work as a disability studies scholar.

My mother was adamant that the only person capable of assessing whether or not a life was worth living was the person who was living it. She was also firm in her insistence that we cannot truly understand or anticipate how we would experience and value life with a severe disability unless it happened to us. My mom believed that, in the absence of clear instructions from the affected person, we should always err on the side of life. She argued that, even when a terminally sick or injured person expressed the desire to die, all resources for counseling and support should first be exhausted.

This final, irrevocable step was never to be entered into lightly, my mom insisted. And it was certainly not to be a judgment based on population studies, cost-benefit analyses, or statistical data. Life and death decisions cannot be made on the basis of either dehumanizing Big Health data or maudlin disability metanarratives.

And yet, for far too many people who are severely ill or injured, this is precisely what occurs. The determination of which lives are “worth living” and which aren’t is too closely tied to statistical averages for a “meaningful” recovery based on population studies. The individual, in other words, has become a data point on a sliding scale that neither the patient nor the family has created. Where the patient’s prognosis falls on this quality of life scale strongly influences and often even determines whether they live or die.

But that’s not the only factor at play. Even beyond medico-scientific standards for assessing quality of life based on prognostic statistics, another, more pernicious influence is at work. It’s the cultural metanarrative of life with a profound disability as fundamentally intolerable.

My mother had heard it all, and so often that she could practically recite the dialogue by heart. They were well-meaning but intrinsically dangerous comments regarding the “strength,” “determination,” and “perseverance” my family and I had shown in building a life even after my physical impairments had become severe. We were to be admired. We were noble. We possessed a strength of courage and character others did not. We’d made a life together in circumstances that would make them “not want to live.”

Such backhanded compliments always raised mom’s ire and indignation, because she understood the inevitable corollary, even if others did not. To characterize the choice to live with a severe disability as noble is to inevitably make that decision both optional and extraordinary, beyond the parameters, expectations, and capacities of ordinary life. To characterize a happy, fulfilling, and accomplished life in the presence of a profound injury or illness as somehow heroic is also to situate it as beyond the pale of mere mortals and, therefore, not an option for any but the select (and martyred) few.

These are the presumptions on which the false binary of the “quality versus quantity of life” paradigm are based. First, it presumes that the quality of life of a severely disabled person is always already deficient or “intolerable.” Second, it presumes that the only answer to an already intolerable quality of life is a corollary reduction in quantity of life. In other words, if the quality of life is not bearable, then you must end it. When quality shrinks, so too must quantity.

The nexus between quality and quantity of life that persists, both in medico-scientific discourse and in cultural metanarratives, of “disability as tragedy” leaves no space for the discovery of alternatives. An ostensibly unbearable quality of life for a disabled person is automatically assumed to be an intrinsic and permanent state. It suggests that “intolerability” is an unalterable reality of the disability itself. That makes it possible to ignore, deny, and leave unaddressed the social, cultural, economic, and scientific inequities that make living with a profound disability far more difficult than it needs to or should be. In other words, for many severely disabled persons, it is not the injury or illness that is intolerable. It is the lack of support and resources.

Rather than making  communities more accessible and skilled in-home nursing more affordable for families (while adequately supporting workers with a living wage), the “quality versus quantity” binary mandates that it is not the social and cultural impediments that must be removed to optimize quality of life for ill and injured persons. When quality of life falters, it is the individual who must sacrifice, either by being warehoused in a facility that can offer little more than subsistence or by succumbing to death.

As the mother of a severely disabled child, she understood the value of life in its myriad forms. She neither feared nor lamented disability. Where there is breath, my mother believed, there is a life that has purpose. Where there is a heartbeat, there is a living being whose existence has value, whose presence brings joy and meaning. There is, in other words, a life force that warrants both respect and care.

And my mother did not speak of her convictions only in the abstract. “If I am ever in a coma or ‘vegetative’ state,” she told me more than once, “talk to me. Read to me. Play my music. Do my hair. Even if they tell you there’s no hope, give it time. I will go when God is ready for me.” These are the principles by which my mother lived, and they are the principles by which she died.

In the early days following her diagnosis, however, the pressure to refuse the tracheostomy and feeding tube was intense. I was warned repeatedly by her medical team not to “confuse quality of life with quantity of life.” I was admonished not to let my desire to hold on to my mother override what would have been her wishes. It was implied that to sustain her in such a state would be both selfish and cruel.

And, I admit, I was shaken. Despite countless conversations, the myriad examples of her past actions, and even her explicit verbal instructions, I questioned myself. I doubted. I felt guilt and, worse, I felt terror that I was unintentionally torturing the woman who had been my protector and second self for my entire life.

That I was already deeply familiar with every argument the medical team made to persuade me didn’t dampen their impact in this most critical and vulnerable moment. The fact that my mom and I had discussed, and she’d repudiated more than once, the false binary of quantity versus quality of life didn’t matter. That my mom had expressed her belief that medical science does not fully understand or recognize the exact nature  of human consciousness did not prevent me from wavering at times.

Ultimately, it was the intercession of the palliative care team that made the difference. They listened to my stories. They learned all they could about my mother. And they carried that information to her physicians, who from then on acceded to our best judgments with diligence and respect.

And, as she always wanted, my mother and her Creator made the decision for us as to when her life should end. On a Monday afternoon, we were preparing for her transition to the stroke rehabilitation hospital. On Tuesday morning, she softly slipped away.

Now, as we learn to live in a world dimmed by the loss of her light, I’m haunted by the thought of the families who have been, are, or will be shamed into making decisions they know are not right for their loved one, cowed by the destructive false choice of “quantity versus quality.”

How many practitioners, particularly as the COVID-19 pandemic rages on, have rationed, curtailed, or denied care on the assumption that life with a severe disability is inevitably intolerable and unalterably valueless? How many families have been forced to make a choice they would later regret because they had no one to intercede with the “experts” on their behalf? How many spouses and children were compelled into sacrificing their loved one because the only knowledge they had of profound disability was the cultural narrative of disability as tragedy?

I was raised and guided by a woman who refused to relinquish to strangers the power to adjudicate if her life—or the life of her child—were a life worth living. How I wish that everyone could be so fortunate.

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Living (and Leaving) Diagnostic Labels

Several white chrysanthemum flowers

When I was 20 months old, I was diagnosed with what was then known as Juvenile Rheumatoid Arthritis (JRA). Recently, though, the terminology has changed to Juvenile Idiopathic Arthritis (JIA), reflecting the often ambiguous origins and trajectory of the illness.

Prognosis is notoriously elusive in JIA disease, but in 1977, when I was diagnosed, this was especially the case. My condition proved to be particularly severe, however, and across the next four decades, I would spend a great deal of time in sundry doctors’ offices, clinics, and rehabilitation centers. There I would collect diagnoses as easily as some people collect picture postcards or salt and pepper shakers from around the world.

When I was growing up, it felt as if every new medical consult brought with it another label defining some feature of my body as inherently pathological. Indelibly marked. Fundamentally altered and “othered” by the slow march of the JIA through the cells and tissues of my body.

I was a fiercely imaginative child, forever losing myself in books and endlessly fascinated by words. So perhaps it isn’t surprising that the labels variously ascribed to my body should have an impact.

At the time, I recall being particularly stricken by how many of the terms seemed to derive from nature: hollow reed deformity, wheat stalk fracture, boutonniere deformity. With every phrase casually bandied about by the latest specialist, clinician, physiologist, or therapist assigned to my case, my mind immediately conjured the image. My spine transformed into a bamboo shoot. Golden seed grasses displaced my fractured tibia and fibula. Fluffy white chrysanthemum petals bloomed from my fingertips.

Soon, I no longer recognized my body as my own. No longer recognized it as human. It remained, perhaps, an organic entity. A living being. But it had become chimerical. An amalgamation of diagnoses. A swirling constellation of pathological disorder.

Perhaps this, more than any other attribute of my experience with JIA, is why I became a writer and a disability scholar. In The Birth of the Clinic, Foucault describes the diagnostic label as that which renders the unstable, inherently vulnerable body docile, predictable, domesticated. In pathologizing the body, Foucault argues, it becomes knowable, classifiable. “Untamed” sickness is domesticated through the language of diagnosis.

Ultimately, though, this is not a matter of wresting control from the forces of biological chaos. Rather, it’s about conscripting the recalcitrant body into the mechanisms of power, about subjugating the body that refuses to play by the rules. It’s about invoking the power of authority to humble extraordinary bodies, to borrow Rosemarie Garland-Thomson’s terminology, into ordinariness, even if that ordinariness was the mundanity of pathology, of one diagnostic label appended to another until only the expert could, at last, understand the body to which they were ascribed.

To be diagnosed is to be taxonomized as pathological, and to be pathologized is to be coopted into the domain of the clinic, where only the expert has the power to comprehend, to describe, and to define. It’s a subtle but pernicious game that establishes power relationships fundamentally through language.

I have never wholly escaped the labels assigned to me over the years. I still at times look at my fingers and see flowers. When my neck refuses to yield to my commands to turn this way or that, I instinctively envision a rigid hollow reed.

It wasn’t until I learned that the name of my condition had been formally changed within the medical establishment that I realized how deeply I had internalized my own diagnostic label(s). I felt, in fact, a deeply emotional but instinctive sense of resistance in learning that Juvenile Rheumatoid Arthritis had suddenly “become” Juvenile Idiopathic Arthritis. The knowledge came with a surprising, almost absurd sense of panic, as if my identity had been threatened. Without JRA, who am I?

And what is more troubling is that such questions, such moments of existential confusion, came to me not as a child, not as a teenager still developing a sense of self. I was a grown woman. Not only that, I was a scholar, with a PhD in English, more than a decade of teaching writing, and nearly 20 years of studying both language and it relationship to disability. Yet those questions came unbidden, that sense of discomfiture arose from a visceral place.

The language of diagnosis is intimate and powerful. It all too often defines and circumscribes one’s place in society, in the community, in the power/knowledge structures through which our modern world operates.  But it also shapes our sense of self, who and how we are in the world. And thus, it is the point where resistance must begin, where counternarratives must emerge. For every diagnostic label attached to a living, breathing, autonomous human being there must be a counter-descriptor, derived from, for, and by the person themselves. And that self-narrative must supersede all others, including and in particular the now superordinate language of the clinic.

And yet, a caveat: I do not propose that we abandon the language of the clinic. Understanding illness and injury and ensuring quality of care depends upon a standard and efficient discourse among caregivers. But it is imperative that the discourse of the patient neither be excluded nor subordinated.

Therapeutic models, whatever their stripe, must privilege patient-directed discourse. Opportunities for self-narrative must be integrated into treatment strategies, whether in the form of writing therapy–without or without the mediation of an assistant– oral storytelling, or some other form of self-expression. Patient-driven discourse must inform the clinical encounter, not in the standard format of the clinician-directed case history and medical narrative but in the idiosyncratic forms through which the patient chooses to narrate, describe, and discuss their embodied experience. And this is a skill that clinicians must be trained in during medical school, lest they never learn to appreciate the harm that diagnostic labels can inflict. And in conjunction with this, the self-narratives of persons with disabilities, outside of the familiar and exploitative binary of the trauma porn/supercrip genres, must flood our classrooms, our community, and our mass communications.

Only in this way will persons with disabilities be heard…in the clinic, in the community, in the media. And it must begin immediately, before diagnostic labels start to be internalized by those at whom they are directed. The sooner persons with disabilities assume power over the language of our embodied experience, the more quickly the language of the clinic will lose its power over us.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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