I recently came across a short article, “The Creation of Disease” (2013), which touches on the emergence of understanding addiction as a medical disease, rather than a criminal deviance or moral failing. This disease model argument is used by many advocates for harm reduction and drug-use recovery/treatment services, myself included. In many of the harm reduction spaces I have encountered, this idea is untouchable, almost gospel. Over the last few years, I have begun to think more deeply about this argument and its utility.
In the article, the concept of the diagnosis of disease is discussed within the larger context of what counts as disease within dominant medical modalities in the U.S. The author concludes that the (often ill-defined and ever-changing) diagnostic criteria for all types of diseases is useful as a social-political artifact about what people find to be ‘sickness’ at various moments in time. The designation as disease often decides what is considered worthy of collective resources rather than a claim of “moral delinquency.” The author’s argument, in my interpretation, is that diagnostic criteria are not only useful for this socio-political understanding of society, but they are perhaps more useful as an analysis of society than of the physical body.
There are notable exceptions to the idea that the marking of an experience as ‘disease’ results in the allocation of collective resources. The emergence of HIV/AIDS comes immediately to mind as something that was generally considered a disease by medical professionals for many years and yet did not receive significant resources without the sustained advocacy of people living with HIV and their loved ones. Historical and contemporary examples of the lack of resources (and even public acknowledgement) for sickle cell anemia, lead poisoning, hepatitis C, and other health concerns also come to mind. There are also numerous examples of how collective resources are distributed in vastly different ways depending on the race, gender, age, occupation and other factors of the person with the ‘disease.’
Ultimately, the article reminds me of something that I often think about and discuss with people I trust about mental health diagnoses; diagnoses are, without a doubt, political in both conception and effect. Regardless of how often it claims objectivity, medical science has had and continues to have many points of view and many goals; as we all do.
This acknowledgement is not intended to bolster the dismissive and dangerous claim that we can just suck it up or smile our way out of our concerning emotional states. These concerns and experiences are real, as are the physiological symptoms. But how medical scientists categorize and treat certain emotional states as ‘disease’ is political. How they decide what kinds of suffering or what kinds of behaviors they consider to be worthy of attention, time, and energy is political. So, too, are the conclusions and recommendations resulting from that attention.
While this is a truth that I always suspected throughout my childhood (surrounded by mental health professionals treating me and my family members, each of us classified and reclassified over the decades according to the current medical science), it was driven home for me by Dr. Ray Winbush at a Baltimore Racial Justice Action event five or six years ago. He made a passing comment that there was a relatively accepted mental disease in 1851 called drapetomania, detailed by a physician who used mostly biblical arguments. It’s singular symptom was fleeing the conditions of enslavement and it’s only known ‘sufferers’ were enslaved Afrikans in the U.S. It is obvious to (almost) any casual observer that this diagnosis served to uphold a political and economic system of white supremacy, and had absolutely nothing to do with any concern for enslaved persons’ psychological well being.
If our medical sciences were so clearly crafted to serve white supremacy in the mid to late 1800s, what would preclude the members of the American Psychiatric Association (APA)–the publishers of the Diagnostic and Statistical Manual (DSM)–from having an oppressive political agenda today? Not much. United States healthcare history is riddled with similar examples. It wasn’t that long ago that the APA officially considered same-gender sexual attraction a mental disease for which there were numerous recommended treatments. It took years of pressure from within and outside of the field of psychiatry for the APA to replace the diagnosis with a series of more vaguely worded sexual orientation related ‘disorders’ in 1974. Despite these and countless (seriously, countless!) other examples* of diseases that further various oppressions, we rarely–if ever–discuss the DSM (or any other collection of medical guidelines) as social-political documents.
I am not trying to argue for the abolition of medical diagnostics or even of the DSM; rather I am reminding myself of the powerful and pervasive myth of objectivity and neutrality in healthcare and medical science. We have never had a time when medical science has not colluded with structural oppression. It may be less important, then, as harm reduction and social justice advocates, to ask ourselves about the ‘accuracy’ of disease diagnostics; it may be more important to ask ourselves about their utility and effect.
I am left with a number of questions (that grow in number by the hour):
- What do we make of the call for a collective vision of ‘addiction as a disease’ when we understand the concept of ‘disease’ as more politically, rather than biomedically, meaningful?
- Do we continue to push the disease model argument because it is a relatively palatable tool available to us? This model seems to help people to stop judging drug use as a moral depravity and rather understand it as an individually faultless misfortune. Although the model is clearly helpful in that regard, are there any ways in which it is damaging?
- How will we get our needs around treatment and helpful assistance met if we do not classify certain drug use behaviors as a disease? We have a system that will typically only allow treatment access if one has the corresponding diagnosis; you don’t get prescribed methadone unless you get a diagnosis of an opioid use disorder, for instance. Additionally, to my knowledge, medical science does not study treatments for conditions it does not consider to be ailments, and therefore medical science may not spend time and energy on this issue if drug use is not considered a disease.
As you might have already suspected, I don’t have any satisfactory conclusions, suggestions, or answers. All I am comforted by is that with more historical knowledge and exploration, we will advocate for shifts with eyes wide open. This does not come close to a guarantee of any right answers, or even steps we can take that won’t cause harm. I only hope it will allow us the reflexiveness and stamina required to build a more just future over the long term.
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My commitment to further learning: Fatal Invention and Biology of Desire are two books I look forward to reading in 2019. I have heard that they are helpful in the exploration of the political meanings of disease and medical science.
*None of this is meant to ignore the numerous examples of cruelty within the dominant healthcare system in the U.S. aside from diagnostic schemas–examples that could and do fill volumes already written and that will continue to be written in the future.
Harriet Smith, BHRC Executive Director