In modern culture, our bodies’ needs are often seen as something to overcome or as interfering with our routines. Getting sick, growing old, getting injured – these are seen as inconvenient experiences that take us away from our “real lives.”

In reality, sickness and pain are older than humanity itself. When we lose sight of this, we risk excluding the experiences of those for whom bodily awareness is an unavoidable part of being alive – namely, those who experience chronic illness and disability. We also risk forgetting that ignoring our bodies comes at a high cost; numbing our pain can also numb us to the pleasures of experiencing life in a body.

In You Will Get Sick, the main character experiences a major disruption to his way of living, and has to come to terms with his new physical reality. As the production’s Disability Dramaturgy Consultant Madeline Charne writes, “with each passing year we take yet another step away from the totalitarianism of the body and work to perfect our lives so that our body interferes with them as little as possible…And yet…the body will not be ignored forever.”

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Reframing Disability and Chronic Illness

For people who experience chronic illness, disability, or both, the body is an ever-present part of daily life. It is noteworthy that disability and chronic illness are one of only a few marginalized identity groups that anyone can join at any point in their lifetime. According to the Centers for Disease Control and Prevention, six in 10 Americans live with at least one chronic disease. Despite this, chronic illness and disability are rarely acknowledged or taken into account by mainstream culture.

According to theorist Alison Kafer, author of Feminist, Queer, Crip, the Social Security Administration and the US Supreme Court create strict definitions of disability and non-disability, so as to limit who qualifies for benefits and who merits protections under the Americans with Disabilities Act. In reality, the line between “disabled” and “non-disabled” is much blurrier. A medical understanding of disability and chronic illness, while useful in raising questions about who gets care and the quality of said care, can risk framing ill and disabled individuals as defective, or in need of fixing.

In Kafer’s alternative, social model, “the problem of disability no longer resides in the minds or bodies of individuals but in built environments and social patterns that exclude or stigmatize particular kinds of bodies, minds, and way of being.” Essentially, what if the issue isn’t with people being sick or experiencing pain, but instead with a society structured so that only healthy, able-bodied people are able to navigate daily life?

The modern concept of “daily life” at all is formed around the idea of an “independent” adult working at least 40 hours a week. Needless to say, this strict schedule is not a possibility for many. A “full-time” work schedule places high demands on one’s body, mind, and time, and can be especially taxing for chronically ill or disabled individuals.

Because of the work restrictions that can result from disability or chronic illness, people who experience these conditions often have more time to explore their own mind and pleasures. Living outside of the typical capitalist, 40+ hour work week of adult life means time to explore what poet, writer, educator, and social activist Leah Lakshmi Piepzna-Samarasinha refers to as “dream time” in her book Care Work. She describes “dream time” as “time for the stories to grow. Time that is not logical, rational, clock time, punch-the-clock time,” time that she only has the pleasure of experiencing because of all her time spent in bed.

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Hidden Costs

Despite the pleasures of “dream time,” disabled and chronically ill people can sometimes feel alienated from a society that doesn't take into account their financial and emotional challenges.

According to the National Disability Institute, a median-income household with an adult who has a work-disability requires an additional $17,690 a year to live at the same standard as a fully able-bodied household. In addition to missed earnings from a disabled family member, these costs also include missed earnings from family members who may reduce their work hours to provide care, costs for personal assistant services, healthcare, service animals, and costs to make one’s home accessible. In a society that places undue value on an individual’s economic output, individuals with work-disabilities are forced to take on an undue economic burden.

According to Psychology Today, research suggests that experiencing chronic physical illness increases one’s chances of dealing with mental illness, and vice versa. For many people experiencing chronic illness or disability, having loved ones who are unwilling to accept the uncertainty surrounding their health can put their mental health at risk. Alison Kafer describes how, in reaction to this, “those who have been most vocal in imagining [her] future as ripe with opportunities have been other disabled people, who are themselves resisting negative interpretations of their futures.” By accepting uncertainty and positioning ableism, rather than disability, as the challenge to be overcome, Kafer imagines a future and a present world that understands disability “as political, as valuable, as integral.”

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Reciprocal Care as a Way Forward

It doesn’t have to be this way. What if care, typically seen as mandatory, feminized work, was valued and rewarded? What if care, often viewed as a one-way transaction, was understood to work in multiple ways and directions?

Kafer describes how limiting care work to the nuclear family hides the fact that accessibility is a society-wide issue, placing care burdens on individual family members, usually women. When it is assumed that this work should be done for free, hired caretakers are often paid poorly and devalued for their services. The result is dehumanizing to both the caretaker and the person needing care, creating a dependence-based relationship.

As an alternative to this model, Piepzna-Samarasinha proposes a network of “fair trade care webs” that “draw on sick and disabled knowledge about care.” In Care Work, she describes how disabled people “can still offer reciprocity to each other, even if we can’t offer the exact same type of care back,” and that non-disabled people often lack the imagination to recognize this.

This is akin to the way that writer and educator Mia Mingus describes the concept of “access intimacy,” as “the way your body relaxes and opens up with someone when all your access needs are being met.” On her blog, Leaving Evidence, Mingus illustrates how “access for the sake of access is not necessarily liberatory, but access for the sake of connection, justice, community, love and liberation is.”

In this way, interdependence can be an antidote to the myth of independence, as well as the dehumanization of dependence. 

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References