We live in a country with a specific perspective on health — we admire the young and able-bodied, and we laud those committed to what we deem a healthy lifestyle of natural foods, clean living, and disciplined exercise. Alternatively, we cast down those we assign the title of “unhealthy” including those with disabilities and chronic conditions. We make the implicit assumption that individuals with poor health are to blame for their ailments, that with a few lifestyle changes a cure is inevitable.
Last year, the CDC updated existing information regarding chronic conditions. Their primary page explaining chronic disease reads in an unsettling, yet familiar manner. This page identifies the most common chronic conditions, quickly following up with the economic toll for the nation (an estimated $4.1 trillion in annual health care costs), and ending with major risk factors including tobacco use, poor nutrition, physical inactivity, and excessive alcohol use.
Ignored is the context of a chronic condition, the people behind the numbers, and other risk factors like genes, age, and family history, all factors beyond one’s control. We’re told a specific story — that if you are sick, it is your own doing and it is costing our nation money.
Discrimination during crisis
Never in modern history has this presumed burden been more apparent than during the COVID-19 pandemic. While the early days of the pandemic were met with mask mandates and municipal lockdowns, these were quickly thrown out to meet the American standard defense of personal freedom and economic success.
This is when the situation worsened for the 1 in 6 Americans living with chronic conditions. These individuals were thrown to wolves, left to protect themselves and fortify their bodies at the risk of an unknown assailant that was ever-changing and spreading. These people were relegated to their homes, not only fearful of disease but unable to participate fully in society. This was a nagging reminder that we look at those with disabilities differently, their personhood is challenged.
Although the COVID-19 pandemic brought this to the forefront for many living with chronic conditions, it existed before and continues to permeate our society. We have to ask ourselves what perspectives shape our views of sickness and health.
As a nation, we value health, not simply for comfort or what it affords us, but as a signal of one’s virtue. This is not a new notion, but something so deeply ingrained in the fabric of our lives as Americans that we don’t stop to wonder how we got here.
America’s foundation
America was founded on religious roots with the arrival of the Puritans on the shores of what is now Massachusetts in the early 17th century. The Puritans believed in a strict interpretation of the Bible and sought to purify the Church of England from what they perceived as corrupt practices. They established colonies in America where they could practice their religion freely and create a society that reflected their beliefs. Puritan values such as hard work, self-discipline, and frugality were foundational to the American ethos and helped shape the nation’s political and economic systems. While America has become more secular over time, the puritanical influence on its founding principles and cultural identity continues to be felt to this day.
The Puritans believed that good fortune and health were signs of God’s favor and that they reflected something about a person’s character and piety. They also believed in predestination — a doctrine that holds that God has already determined who will be saved and who will not, regardless of their actions or beliefs. It is not a leap to understand that individuals who believed they were predestined for salvation viewed themselves as superior. This superiority is a foundational characteristic of the religion on which America was built and speaks to how we view those deemed unhealthy. If God rewards those of good character with health, then He must punish those who are of poor character with sickness. God has predetermined the damned.
Modern meritocracy
We see these foundations in our institutions in America today. We can follow the thread from puritanical roots to the popularization of neoliberalism and meritocracy in the mid-20th century. Meritocracy emphasizes that individuals should be rewarded based on their abilities and achievements, their merits. While it posits that we should ignore social factors that in the past have favored the wealthy and the white, it also chooses to ignore the historical and social context that has left the disadvantaged, including those with disabilities and chronic conditions, marginalized to start.
Meritocracy creates an “us vs. them” mentality by dividing people into winners and losers, the fortunate and the less fortunate. We attribute success to our own doing and neglect to understand that one’s position, including one’s health, is the result of our choices and not of circumstance be it luck or misfortune.
The “supercrip” narrative suggests that disabled individuals are required to surpass the accomplishments of non-disabled individuals in order to be considered valuable in society. This emphasis on individual achievement reinforces the idea that success is based solely on personal effort and talent while disregarding the systemic barriers and inequalities that may limit opportunities for people with disabilities and chronic conditions.
Philosophical roots
Our perspectives are not solely molded by our nation’s first colonists nor by modern capitalism. We can trace these notions back to the great fathers of philosophy Plato and Aristotle.
The concept of meritocracy can be found in ancient Greece, where the philosopher Plato advocated for the rule of “philosopher kings” who were chosen based on their wisdom and knowledge, rather than their social status or wealth.
Aristotle carried on this belief that power and rule should be in the hands of virtuous individuals who are capable of governing justly and for the common good. However, Aristotle believed that good health was an important component of virtue. He discusses the concept of eudaimonia, or “human flourishing,” which he considered to be the ultimate goal of human life but to achieve eudaimonia, you have to embody virtues including the virtue of good health. Therefore, the disabled were not thought to be capable of governing society and holding any form of power.
These foundations result in some obvious stereotypes about what it means to be virtuous and pursue the good life. Those with disabilities have committed a punishable offense, therefore we do not need to treat those people with respect. Those with disabilities are not virtuous and are, therefore unable to contribute to society. Those with disabilities have a lower quality of life, therefore their life is of lesser value and it is not up to us to provide for and respect human life. These assumptions challenge the common good and erode our civic life, so what do we do from here?
Solutions
We must think hard about where and how our beliefs take shape.
It would be naive to believe that our impressions of disability and sickness are not shaped by the various institutions that formed the foundation of our nation. The democracies of Ancient Greece favored the virile, while the attitudes of the original colonizers towards disability were negative and stigmatizing. The strong beliefs of Puritans in individual responsibility can be seen in our modern form of meritocracy. It is up to each one of us to question our beliefs in order to understand the basis of our beliefs and if they have been made of our own logic or historical bias.
We must be aware of the language that we choose.
“Nothing about us without us” is used by disability rights advocates to emphasize the importance of including people with disabilities in decision-making processes that affect policies and programs that impact them. This ought to apply to the language we use as well.
Even language framed in a positive light can have very distinct and different connotations for those with disabilities and chronic conditions. The term “survivor” is often associated with cancer patients, but can be problematic. For many, this term can feel as though they are tempting fate by ignoring the risk of recurrence and for those not deemed survivors, well are they losers? We see hints at this with the phrase, “She lost her battle with cancer.” In many instances of chronic illness, we use the term “warrior” to signify a hard conflict between body and will. This idea of battle leans into our modern meritocracy where we have winners and losers, those who tried hard enough and those who have not.
If we are choosing wide-sweeping language for swathes of people, we must listen and use terminology that is representative of their experiences.
We must promote the common good.
Promoting the common good involves working toward the well-being of all members of society. It requires a recognition that our individual interests and goals are interconnected and interdependent with those of others and that we have a responsibility to contribute to those most in need of support. We can do this by engaging civically (voting, writing lawmakers, running for office), advocating for policy change, volunteering and donating, and practicing empathy and compassion in our interactions.
We use health as a signal to show us the worthiness of a person to be treated as a person. We ignore the cost, the emotional toll, and the pain and degradation associated with poor health until we are impacted. We do this because, from our worst perspective, the person with poor health must deserve it in some way, or, from our best perspective, the person must be grieved for or pitied. This allows us to ignore the human rights of these individuals and push aside healthcare policies that could improve the livelihood of those with chronic conditions.
We extol health as a virtue that tells us something about the goodness of a person. We do this not because of logic or reason, but because our institutions were built by “healthy” individuals who wanted power and prestige. Today, we can and ought to do more to understand where are biases begin and make cognizant choices about our language and civic engagement to promote the common good.
