Reflecting on My Mom’s Death: Moving Toward A More Complex Understanding of Health, Disability, And Dying
Image: Author's mother, Debra Bond-Yancey. Photo credit: Rebecca Sue Photography.
Throughout the U.S. there is a permeating myth—a societal assumption that health, disability, and death have a predominantly linear relationship (youth/health → aging/illness/disability → debilitation/death)—that deeply impacts our well-being, but is rarely questioned. This myth prompts us to assume that young people are healthy, and that older and disabled people are less healthy. It tells us to fear aging and disability because the older and more disabled we are, the further we are from health. But in truth, while health, disability, and aging are all intertwined, they are far from linear and have a much more complex relationship than this limited narrative.
Last year, the headline “Half of Young People in the U.S. Have a Chronic Condition” temporarily shook many peoples’ belief in the health-disability-death myth by challenging one of its core assumptions—that youth and health are synonyms. As a society, we generally associate youth with health, and in doing so, we also associate aging with illness and disability, and debilitation with dying. These social norms create disbelief and distress when young, healthy people get sick or die. When asked, many people say they want to pass away in their sleep or die peacefully from old age; however, the reality is that early deaths, unexpected deaths, and complicated deaths are common. The societal assumption that health, disability, and death have a predominantly linear relationship limits our ability to see, understand, and address layers of complexity within health and well-being. The perpetuation of this myth wreaks havoc on our lives, influencing factors as far-reaching as child development, cancer treatment, toxic beauty standards, insurance coverage, social justice, and mental health.
Specifically, the health-disability-death myth:
Doesn’t represent reality because health, disability, and dying are not inherently linear
Minimizes our ability to uplift and support the diversity of human experience by creating a false narrative
Creates social norms that negatively influence society and healthcare as a system
Promotes ableism—prejudice, bias, and discrimination against people living with disabilities—by associating disability with illness, unhealthiness, and end-of-life
Encourages internalized ableism—disabled people absorbing ableist biases and beliefs, and applying them to themselves, typically subconsciously—by making disabled people feel like they are worth less to the healthcare system and to society as a whole
Promotes ageism—prejudice, bias, and discrimination against people based on their age—by associating aging with declining health
Shortens lifespans; people with a positive view of aging live a median of seven and a half years longer than those who view it negatively, so narratives that support ageism in society and healthcare have direct negative impacts on our health
Creates avenues for ableism, ageism, and other isms to mutually reinforce and fuel each other
Interlocks multiple layers of marginalization, deepening the entrenchment of biases, exclusion, discrimination, and systemic inequity, and slowing and complicating solution-building
Causes significant flaws and barriers within health care and related systems; for example, limiting care coordination, deprioritizing care that doesn’t ‘fit’ the myth, and damaging patient experience
By confronting these harmful assumptions and reframing the relationship between health, disability, and dying as non-linear, we can make important improvements to the way our society and systems address these entrenched issues. Potential benefits of this mindset shift and associated action include increasing lifespan, improving care access and quality, advancing equity and justice, and leading us toward well-being for all communities.
A Personal Perspective: Reflecting On My Mom’s Death
Before my mom passed away, I spent a lot of time thinking (and worrying) about what the actual moment she passed would be like. Some of my concerns were practical: I would be lying if I said squeamishness wasn’t a major motivator for my academic switch from pre-med to community health. Some concerns were entirely self-absorbed: Who would read over my grad school papers to help ease my chronic submission anxiety? Who would I call when I was bubbling with hypomania or ADHD energy and needed someone to match my vibe? Some concerns were deeper: I held—and likely will for the rest of my life—a profound sadness for her and all of the moments she envisioned having that were now out of her reach. In that way, I’m realizing her passing won’t be one moment, but rather many moments—all of the times we have to let go of things that could or should have been.
At the tail end of 2022 on New Year’s Eve, I hovered by my mother’s bedside. She had begun rapidly declining the week before Christmas and the whole house was jittery. As usual, I was distracted by insulin calculations. What took my mother years to perfect with a series of endocrinologists and nurses had recently fallen apart, giving way to an unrelenting stream of “I don’t knows.” Her blood sugar wasn’t doing what was expected, and the providers’ best guess was to maintain my mom’s insulin as scheduled and decrease it cautiously over the next week. But my instincts and her blood sugar monitor told me otherwise. A calm faded over me as I quietly put her long-acting insulin pens back into their bag and set them gently on top of a growing pile of medications, vitamins, and supplies she would never need again. A few days later, on January 3, 2023, my mom passed away. My dad and I were sitting on either side of her, holding her hands.
Looking back now, I’m still making sense of everything. My mom was a lion, an advocate, a fighter, a former insurance executive and corporate negotiator who, at one point, oversaw 3,000 physicians in her area. Just three years prior to her cancer diagnosis, she’d joined me in Thailand and Myanmar, where we helped build a concrete-block house with Habitat for Humanity. At her memorial, a longer-than-requested video played—dozens of photos I compiled, organized chronologically, and set to a few of her favorite songs. As the video progressed, the hair faded from her head, then grew back, then faded again. Her skin grew pale, then yellowish, then light again. Her plump cheeks grew thinner and her skin aged faster. And all the while, her wide, radiant smile beamed back at us. That’s just who she was.
I knew from the moment my mom decided to try treatment that she would fight the disease and be valiant. What I didn’t expect was how much she would have to fight everything else. Every step of her journey from diagnosis to treatment, and eventual shift toward end-of-life care—every step which should have been focused on her health, well-being, comfort, and joy—was overshadowed by systemic blockers, coverage gaps, coordination lapses, administrative pushback, appealing denied referrals, financial constraints, and dropped balls. These distractions challenged my mother’s spirit even more than the cancer diagnosis. The care, familial, and cultural systems in which she and our family unit were embedded became intertwined, informing decisions and experiences far beyond what we initially realized. Intergenerational medical and family trauma clouded our judgment. My mom’s life-long eating disorder complicated her ability to hear oncologists urging her to eat normally and try to gain weight. My parents’ misguided view that health and disability exist along a linear continuum—where the more disabled you are, the further you are from health—delayed her transition to hospice care until it was almost too late.
As someone who identifies proudly as disabled and neurodivergent, my family’s internalized ableism was just as hard to watch as the progression of the disease. Family members repeatedly voiced perceptions that palliative and comfort care were representative of “giving up” and my mom refused assistive equipment—such as a walker, ramp, or hospital bed—until she was almost to the point of permanent bedrest. It exhausted me, and I know it exhausted her, though she never fully acknowledged it.
Somewhere along the way, in all of our attempts to be healthy and alive and well, we—not just my family, but our society as a whole—lost the reality that dying well and living well with disability are just as much a part of health and well-being as living well. In our final moment of passing, there are no siloes, no departments, no sectors or fields, no identities or assumptions separating us from how delicate our lives really are. But the myths we adopt and believe along the way have deep implications for not only our final experiences and the hundred little moments of letting go that surround dying, but also for every other moment of our lives as we strive toward well-being and fulfillment.
The Health-Disability-Death Myth Undermines Well-Being
Another personal example of how the health-disability-death myth plays out started much earlier for me. As a child, I knew I was disabled and had a chronic illness before my family members would admit it, and before doctors would take my voice seriously. I complained of joint pain, energy crashes, and a weak immune system. I had constant ear and sinus infections. I passed hearing tests but required people to continuously repeat themselves. I passed vision tests but read at about half the speed of my peers and mixed up words, numbers, colors, and directions. I also experienced a range of mental health and cognitive symptoms that became apparent as early as 4 years old. What I didn’t realize at the time was that this phenomenon of young people with disabilities being dismissed, ignored, and minimized was—and still is—extremely common.
The inability of society and our healthcare system to appropriately address young people who are disabled, ill, or need care typically associated with older adults is just one manifestation of how the health-disability-death myth skews our systems and, in turn, undermines our collective well-being.
The health-disability-death myth fuels:
Rampant ableism and ageism in public health and healthcare, because disability and aging are devalued and viewed as counter to health and life
Prioritizing emergency and end-of-life care over preventative, palliative, and holistic care; the medical system is designed to rally around people who are injured or dying, while people who are trying to live (while aging, disabled, etc.) have to fight every step of the way for even the most basic services
Gatekeeping, where specific types of care are either given or withheld based on biases and assumptions associated with certain stages of health or life course; for example, young people are often met with disbelief and dismissiveness when reporting symptoms associated with older adults or disabilities that are perceived as age-related
Gaps in care access and coordination
Inequity, injustice, and poor health outcomes for young, disabled, chronically ill, aging, and other marginalized individuals
Poor mental health for youth, women, disabled people, older adults, and people with chronic or terminal conditions
Importantly, this myth and the nuances of ableism and ageism impact some groups more than others. For example, older disabled people of color would be more impacted by both ableism and ageism, along with racism. This also causes the premises of the myth to show up differently for some groups of people. For example, young Black men are frequently targeted, harassed, and killed by police. In this case, youth (or perceived youth) does not necessarily contribute to better health outcomes because being young while Black is not necessarily viewed positively by society.
Disability Is Not The Opposite of Health
The ableist perception that disability is the opposite of health is fueled by societal associations of youth with health, aging with disability and illness, and debilitation with dying. However, disability is not the opposite of health; disability is much more complex than that. Health itself is complex, and very little within the worlds of ability, lifecourse, and well-being follow a predictable linear progression.
Disability is a small word that represents a rich, vast world of diverse identities, conditions, illnesses, differences, and cultures. Disability includes experiences as diverse as deafness, diabetes, anxiety, multiple sclerosis, schizophrenia, ADHD, low vision, arthritis, autism, ichthyosis, depression, heart disease, dyslexia, PTSD, lower back injury, and cancer. Furthermore, disability as identity and culture is underexplored, under-researched and, at times, purposely erased.
For many, disability is deeply personal and identity as a Disabled person (or other disability-related identity, such as autistic, Deaf, mad, crip, multiple, or neurodivergent) is significant and important. The broad concept of disability includes entire cultures—sets of behaviors, beliefs, values, ways of knowing, and ways of being—such as Disability culture and Deaf culture. It is critically important to understand disability through this lens because it demonstrates how non-linear disability is, and how limiting it is to view disability as related to illness and aging, but not youth and health. Cultures, identities, and differences are not linear, and are not the opposite of health or youth. In fact, positive experiences with culture and identity are known to have significant positive effects on well-being. Whether a person’s experience of disability is positive or negative (or both!), as understood through the social model of disability, one’s experience can be more influenced by societal limitations, inaccessibility, and ableism than the reason(s) for disability itself. Assumptions that disability is negative or inherently contrary to health play a major part in ableism, systemic exclusion, and poor health outcomes for people with disabilities.
Toward A More Complex Understanding of Health, Disability, and Dying
The care associated with disability must also be recognized as non-linear—not intrinsically associated with youth, aging, illness, health, or death. Twenty-five percent of the U.S. population is disabled, including people of all backgrounds, races, genders, socioeconomic statuses, and ages. Young people can be disabled, ill, and need palliative care. Disabled people can be healthy and well. Older adults can be healthy and either disabled or not disabled. Disability can also be temporary and can happen to anyone. Any person could experience an accident, injury, illness, or period in their life that is disabling or debilitating. Nothing to do with health is inherently linear, and disability, illness, and age are no different.
Helping my mother pass away reframed a lot of things for me. There was a very special moment that existed right after she passed, where all of the things that we usually keep separate in life were mixed together. From that moment, I’ve carried with me the profound somatic experience that the barriers between things are all perceptions and only made real by our continual belief in and tolerance of them. For me, that is what striving toward the highest level of community well-being and equity looks like: a future where the well-being of the living, the disabled, and the dying are all equally valued, and where we no longer tolerate made-up barriers and divisions that serve only the privileged among us.
Unpacking and beginning to address these culturally-embedded myths will help reduce ageism and ableism. Growing toward a more nuanced understanding of the human experience and cultivating empathy across differences are crucial building blocks for community well-being, regardless of age or ability. Taking action to disrupt and reverse the impacts of the health-disability-dying myth involves a commitment to transformative change at multiple levels: personally, in our communities, schools, and organizations, and throughout our systems, policies, and cultures.