Shaming & Blaming: The Adverse Effects of Conventional Disease Etiologies
Constructs of health are complex and multi-dimensional. Similarly, diseases arise from a variety of factors and may include genetic factors, lifestyles and behaviors, environment, and a variety of sociopolitical factors. How we frame these diseases and their causation (etiology) determines their role and function in the larger social sphere. Diseases are socially constructed entities. And sometimes the way they’re constructed can do more harm than good.
Certain contemporary epidemics (notably: diabetes, cancer and HIV/AIDS) have been attributed to a set of factors. Susan Sontag writes in Illness as Metaphor about her experience with her breast cancer diagnosis and subsequent social stigma. Besides experiencing the emotional suffering behind perceived betrayal of her body, she had to constantly face the judgement of others towards her food and nourishment, childhood emotions, and other intimate personal details. The etiology of cancer is certainly complex. Yet, look at how much we project onto cancer patients.
The medical community, in its attempts to understand the epidemic of diabetes ravaging indigenous peoples, propose a genetic basis for the vulnerability of these populations. They call it the ‘thrifty gene’ theory: genes that protect against starvation become maladaptive, giving rise to this metabolic disorder. The link between intergenerational trauma (from genocide and colonization) and chronic disease is being established in the literature. Indigenous peoples globally now have to deal with a construct of diabetes that says being indigenous is a risk factor for the disease; that their genes are bad, their blood is bad. This recalls the days when the federal government screened and scrutinized Indian’s blood so they can receive their land allotments. Over the last century, the federal government has severed the relationship between Indians and their food traditions, forcing commodity food on the reservations and in boarding schools. Now, we stigmatize them for having a bad diet and being sick.
Decades ago, we took their food away and give them sugar and flour, scrutinized their blood to give them land allotments. Now, we scrutinize their blood for glucose levels. In conventional diabetes treatment, doctors assign them a registered dietician, who tells them what to eat again. For many Indians, diabetes onset, diagnosis and treatment is another facet of social control and oppression.
And look at how we stigmatize those diagnosed with HIV/AIDS, attributing the spread of this virus to lifestyle choices.
I’m not claiming right or wrong regarding the cause of disease. Biomedical science has popularized potential genetic causes of disease over the last 50 years. It’s part of an integral perspective, but let’s not leave the sociopolitical dimensions out of the picture.
Furthermore, let’s consider the potential adverse effects of our social constructions of disease, lest we perpetuate social and health injustice. If you’re a clinician, be aware and conscious of your working models of disease causation. If you’re a policy advocate or legislator, do the same. If you’re a community organizer, wellness coach, researcher–it’s time for awareness of these social constructs, these functional narratives, and the effects they have on those afflicted persons.
In other words, be aware of your operational stories and please don’t project them on others.
For more information on the subject of disease, metaphors and social constructionism, I suggest the following readings: