How might the gaze of the Scientific observer, and the embodied “voice” of the patient interact in a system of biomedical pain confirmation defined by pseudo-objectivity?

In the west, the concept of pain and the concept of the voice are often interrelated. What that means is that pain, in order to be recognized in this cultural context, should be visible and vocally communicated. Also, and perhaps most importantly according to this system of scientific belief, this vocal communication must be listened to, confirmed by an authority figure. If the pain must have a voice, then the person feeling it has an obligation to have a voice that is valued as well. These concepts are deeply rooted in colonial rugged individualism. Colonial in the way that people who have voices can take away someone’s painful voice at will. Ruggedly individualistic in the way that a less vocal, less self-imposing, interpretation of pain is viewed less valuable than one that shows on the surface, and a less dualistic view of illness is considered an aberration.

Positivist science has developed a system in which pain is objectively defined, a truth or a lie which must be confirmed biomedically (Mehta, 2011; Frank, 2021). This belief assumes that the perception of the scientific observer (I:e doctor, nurse, therapist) is correct, and that the subjective experiences of the observed can be discounted. In other words, this system of beliefs insists subjectivity be objectively defined and approved of by an authority figure to be real. This paper relates to the field of disability studies as a whole by challenging the medical model as it relates to painful conditions. The power of discounting painful voices is bolstered by the privilege of whiteness/Non-disabledness of said scientific observer. Considering more than half of recent medical school graduates meet the criteria of “white” (AAMC 2019), and only 4.9 percent identify as disabled, which is a marked increase from other years (Nitkin 2020); This paper will focus on the gaze of the white, nondisabled scientific observer, as it remains relevant.

The Unheard Voice

-Scientific Racism and ignorance of the body of color.

The issue of objectively defined subjectivity in a medical system which has been long dominated by eugenicists (Manjeshwar 2020) is that the “objectivity” in question is often quite subjective. For example, it has been found that 50% of white medical students believed that black people don’t feel pain, and that black people are chronically undertreated for pain in relation to white people (Hoffman 2016). The reasoning behind this lies in the racial empathy gap. This is a belief that those not of the same race as the observer are so different biologically that they must not feel pain in the same way the observer does. This affect is seen in the brains of those who hold these beliefs, the neural network that is connected to empathy does not light up when the flesh of someone of another race is being pierced (Silverstein 2013).

I, as a mixed-ethnicity person who is sometimes perceived as white, and sometimes not, can note remarkable differences between medical situations, especially blood draws, when I am white passing Vs. when I am not. When I pass for white, white nurses are usually very caring, they put hot packs on my arms or hands and gently massage the vein to the surface; gently inserting the needle and not moving it around too much, to avoid causing pain. When I do not pass as white, the situation with white medical staff is quite different. Medical personnel might harshly flick the vein to the surface, and when they cannot get a vein to rise or provide blood, they will become irritated and blame me for not drinking enough or being too cold. They seem to believe my body is “undisciplined” and the way to beat it back into shape is with harsh flicking and a tighter tourniquet.

The white scientific observer views the observed in the context of their own experience, and if the body in question does not match a world that the observer can relate to, empathy goes down, the painful voice is discounted. While race is a socially constructed categorization (Howard, 2016), the belief that it is biologically constructed, and that white/nonwhite is an impenetrable, oppositional barrier, leads white practitioners to believe in a sort of “species separation” of races. It is this “separation of species” rhetoric that allowed J.M Simms to perform his fistula surgery on enslaved women with no anesthetic (Wall 2018). While this idea might seem too outdated to be true, the empathy study mentioned above makes the case that this system of beliefs is alive and well.

This “separation of species” way of thinking is often as inconsiderate as it is denying. White practitioners might see the black body as so unlike them, that they believe that learning about the specificities unique to the black experience is unimportant. Weathering is the premature aging of people of color due to the prolonged exposure to stressful life situations, which are the direct product of structural racism (Braithwaite 2018). Weathering, as well as lack of empathy from medical personnel could account for fact that black women are 3–4 times more likely to die from childbirth complications than white women (Harvard Chan School n.d) Weathering accounts for the propensity for black women to develop these conditions, and the racial empathy gap accounts for the apprehensions held by white practitioners when treating these women. They come together to form a deadly misunderstanding

-Ableism

Assumptions from scientific observers, particularly beliefs of fundamental differences between themselves and those they treat, can also impact the care of the disabled (Aller 2016), and render their voice unheard.

Healthcare providers, like the public, might view disabled people through the assumptive lens of asexuality (Leary 2018), they might believe that someone in a wheelchair could not contract a sexually transmitted disease (STD), such was the story of Denise Sherer Jacobson presented in the 2020 documentary, Crip Camp. Denise, who has cerebral palsy, complained of severe lower abdominal cramps to her physician, who insisted without any further questioning that she must have a burst appendix. The doctor went so far as to cut her open, only to find that there was no burst appendix, but in fact, she had the STD gonorrhea. The details of this story illustrate the ways the voice of the nondisabled scientific observer might, in fact, speak over the painful voice of their disabled patients. It is important to note that this is not the first time that “objective” scientific observers have rushed surgery upon the disabled, as the eugenics movement in America performed state-sanctioned, nonconsensual sterilizations on individuals like Denise throughout the 20th century, despite cerebral palsy being non-transmissible and the result of bodily trauma at birth (Manjeshwar 2020). If Nancy was not visibly disabled, the doctor might have asked her if she had been sexually active recently since she was experiencing lower abdominal pain, but due to the fact she was in a wheelchair and her speech sounded different, her answers didn’t matter to the scientific observer, and her painful voice went unheard.

An assumption of an inherent mental illness might be projected on the patient. If someone has an intellectual disability and is having a neurological episode such as a seizure or tic, they might be rushed to the psych ward before a neurological exam is even completed, this was the case of my brother James, who is autistic and also a man of color, He was sent to the psych ward for having tics, despite our mother’s pleading to have a neurological exam done first.

A patient’s education might be discounted, as has happened to myself. I, as a mentally ill, mixed ethnicity woman, who is also a psychology student; went to a psychiatrist who was white and male, and I didn’t pass for white in this interaction. He immediately tried to diagnose me with bipolar disorder. When I said that none of the symptoms I had disclosed indicated bipolar disorder, he brushed me off and told me to take the test anyway. This test also indicated no bipolar disorder present. When I disclosed to him the symptoms of Othello syndrome I was experiencing (Jealousy, Intrusive thoughts of my partner cheating on me, etc.) I made sure to disclose to him that I had complete control over my actions, even citing research that Othello syndrome originating from psychiatric trauma presents in a more controllable manner than that from traumatic brain injury. He said to me “You think you’re in control, but you’re not, you are hysterical by the textbook definition.”

In all these scenarios, the voices of those with a or disability or mental illness are spoken over, the scientific observer imposes themselves over the patient, reasserting their role as the authoritative, rational, experimenter over the chaotic disorganized subject. Subject is not allowed to be observer and is not allowed to make observations for themselves because they believed to not be in a state to do so.

-Poverty

Many individuals in the United States who live in poverty have a voice that goes unheard of by scientific observers, simply by the fact they cannot afford to walk through the doors of the hospital. The body in poverty is a body ignored because it is not considered. If a person is in the hospital with a non-life-threatening condition, they can be denied medical treatment if they cannot afford it due to the “Emergency Medical Treatment and Active Labor Act” (Williams et.al. 2019). Think of this in the context of the voice, no matter how much one might cry out, their voice will not matter until they can pay. Due to this and other intersectional barriers such as, Structural racism, not having time off of work, and the inability to find childcare, it is not surprising that those in poverty avoid getting medical care altogether (Taber, Levya, Peroskie 2015)

The painful voice, when expressed by a body those of authority are systemically taught to not empathize with, is internalized by the observer as a foreign language. The authority does not confirm the pain because it is seen as inhuman, incomprehensible, or unimportant. The voice might be heard, but it is not understood or valued

The Silent Voice

Silent pain is another “language” of the painful voice not understood by scientific observers. The silent pain is a pain felt but not expressed in a culturally normative way (i.e., Physically in the form of crying out or a change in facial expression). When pain is expressed, or rather not expressed in this way, it is also seen as anomalous. Scientific observers might appreciate silence at first as it appears to fit with being a “disciplined” body (Frank 1995). However, the disciplined body obtains the silent, painful voice in order to undergo treatment rituals more successfully and please their doctor. The silent voice in this context is used to express pain for different culturally specific reasons and might frustrate a scientific observer due to the fact these expressions might not match the biomedical findings of test results.

Biomedical pain is expected to be accompanied by affect relational to that pain. And while scientific observers might appreciate a silent voice in the context of enduring the pain of treatment, the hallmark of a disciplined body. A lack of visual or vocal affect in reaction to a medical condition might categorize someone as anomalous, and undisciplined. When combined with the racial empathy gap mentioned above, individuals who express the silent painful voice might be categorized as inhuman.

The need for affect is ingrained in the way children in the United States are raised to identify levels of pain. The Wong-Baker faces scale is widely used in pediatric medical care in order to identify levels of pain using facial affect alone. The lowest level of pain is a happy face, and the highest level of pain is represented by a face visibly disturbed with tears and a very prevalent frown. It is a biomedical guideline of sorts, “if you feel this way you should look like this” (Wong-Baker Faces Association n.d). However, as pain is culturally informed, this scale is not as objective as our medical system advertises.

-Denial of Native American subjective experience and trauma

Some members of a group might have high reported levels of pain, but at the same time, show little to no affect. Native Americans tend to self-report a greater number of painful symptoms and painful conditions whites on average (Jimenez et. al. 2011). However, this subjective expression of pain has been called into question, a 2013 study attempted to encourage the idea that Native Americans do not actually feel as much pain as whites, not by using a self-report method, instead, basing it off a variety of neurological readings (Palit et.al. 2013). This not only narrowly defines pain as a purely neurological response. It denies Native Americans their subjectivity when they are self-reporting more painful symptoms. It would not be surprising if an incongruity between reported pain and affect illustrated the reasoning behind the neurological study, as some Native American individuals are noted as being stoic in response to pain (Givler, Bhatt, Maani-Fogleman 2021). This also relates to the Racial empathy gap as the stoicism expressed also leads to native Americans being chronically under-treated for pain (Givler, Bhatt, Maani-Fogleman 2021)

The reasoning behind stoicism in regard to the painful voice might have a deeper meaning depending on an individual’s tribal culture. However, what many people might forget to take into account, is the fact that centuries of oppression and genocide by authority figures have made some Native Americans distrustful of medical staff (Guadagnolo et.al. 2009). Mistrust of medical staff is also suggested in same medical journal that published the report of stoicism in regard to pain, noting that “pain is expressed to family and friends.” Frank (1995), in his description of a disciplined body, notes that this silent body wants to please its scientific observers, afraid they will scold it for its weakness. However, in a distrustful model of patient-caregiver relation, the patient is not afraid of their own weakness, and they will express it to trusted individuals in the form of dyadic connection. The thought process behind this silent voice falls more along the lines of spite, “you do not deserve my weakness.”

A body who is seen as unlike the white scientific observer, and who is also silent in their painful voice might have their humanity questioned and be denied empathy, such as has what has happened to Native Americans in regard to their subjective pain expression and the nerve study cited above (Palit et.al, 2013). A body who is seen as unlike the white scientific observer but vocal in the culturally normative way might not be listened to due to the lack of racial empathy. But what happens when a body seen as like the white scientific observer, but is also silent about their pain for various cultural reasons? In a binary white/nonwhite culture, those who are seen as white are viewed in a very isolating, Old stock-normative way.

-The “Pan-White” Myth

There is an assumption spread in psychology, and particularly illustrated in Heinzen and Goodfriend’s 2019 social psychology book that the only way that anyone of European descent relates to the world is through individualism, and that to be collectivist is an inherently an “Asian” trait (Heinzen, Goodfriend, 2019). This does not only discredit the beliefs of individualism within nonwhite communities. The belief of white = exactly-like-the-scientific observer provides its own problems.

-“You don’t look like you’re in pain”: A Rusyn perspective on pain expression.

This mistaken “pan white” experience of the world illustrates problem a problem I had reading Morris’s the culture of pain. At the end, he appears to make the absolutist assumption that all European immigrants have completely assimilated to the Anglo-American norms of pain. My problem with this lies in the fact that I grew up in a collectivistic, Carpatho-rusyn American family, and the way they express pain is not only mindful of how the self feels but by the way the family will be impacted. You are taught to hide pain, not for the old-American reason of self-pride, as Morris (1991) seems to state. You are taught to hide it because it might bring your family pain to see you in pain, and your illness might send the family into a state of chaos.

According to a 2012 study of Rusyns in Europe “Healthy family” as well as the singular concepts of health, work, and family are the most common responses to what makes a good life (Cantin 2012). In my family, the concept of “healthy family” is translated into “if one family member is sick, the family is sick.” When my mother’s generation was young, the decision to go to the doctor was not made by an individual or their parents alone, grandparents, extended family, and even neighbors of the same culture were called in for a meeting to determine whether an illness was detrimental enough to the family to warrant going to the doctor, spending the money, and distressing the family even further. These meetings do not currently occur, however, the concept of illness as detrimental to the family order remains. So, to minimize detriment, pain is de-vocalized, and the doctor is only gone to if necessary.

When the doctor is visited, a Rusyn individual will usually be viewed as like the white scientific observer, however, they might become anomalous if it is discovered that the biomedical damage is much more severe than the patient is letting on through facial affect. For example, when one individual in my family broke their finger in a car door, they splinted it, and went to work, because one must work to have enough and provide for the family. They then drove themselves to the urgent care because they did not want to worry their family. When arriving at urgent care, they said with a completely neutral face, “I think I broke my finger.” The doctor, who was a white, individualist practitioner, projected their own identity and way of feeling pain onto my family member and said, “If you broke your finger, you would be showing a lot more pain on your face right now.” It was found my family members’ finger was in fact broken, and they were in a lot of pain, they just did not know how to communicate it in a way the practitioner would understand.

Within the family, laying down while silent for a long time indicates something is wrong and the individual needs to be cared for, yet it does not bring too much attention to the self. This is a difficult thing to communicate in an individualist medical system which relies on reports based on vocal and visual data. Another family member hid their cancer till it got to stage four and they could not eat, and they were scolded for not being more vocal about it to their family by doctors, who thought my family member only held this silence out of self-pride. While Frank (1995) might write about silence being a sign of a disciplined body, loved by doctors. Too much silence is a hallmark of an anomaly. As for myself, being raised with this silent expression of pain, I have learned to act. I try to make exaggerated painful faces that are not instinctual to me. This both aids in keeping doctors from pushing things too far because they do not think I feel the procedure or my symptoms. This also serves as an attempt to make medical personnel see my humanity as a mixed-race individual.

Rusyns might also be anomalous in the way they express the pain originating from stress, Body and mind work as one in the same to them, and Rusyns often express pain from stress and loneliness in a physical manner (Cantin 2012). The traditional medicine of the Rusyns, as it is practiced in my family, is meant to rest the body and the soul, consisting of eating well, drinking tea, and resting with warm baths. This is due to the belief in my family that if the body or the soul is imbalanced both will fall ill. This becomes complicated in a medical system that both says “pain is something you need to get biomedically confirmed” but also runs on the dualistic principle of “physical pain must come from the physical body” when I was struck down with lower abdominal cramping and incontinence, which was found to be originating from stress, I thought I did what I was supposed to by going to the doctor, yet I was made to feel as if I was wasting the doctors time with my “purposeless pain”.

The constant hiding of both pains originating from biomedical damage, as well as those originating from emotional stress, creates an unhealthy body, this unhealth is further exacerbated by the biomedical system by placing blame on the individual for the disturbance of being white on the outside but not expressing their pain like a white person.

The silent “voice” of pain frustrates those who view the human experience by way of putting the self first. As well as those who understand authority as something meant to protect the public, rather than knowing it as something which has brought hardship and devastation to your people. These are voices that go against the model of vocal and facial reporting preferred by the biomedical system, making them anomalous.

Conclusion

Observed pain in each of these contexts takes on perceived meanings relative to how the scientific observer views the body experiencing pain. Those who feel pain but are embodied In a way that is stigmatized are not listened to. Those who feel pain with no biomedical confirmation in the body, as well as those who express and interpret biomedically confirmable pain differently than western cultural norms dictate might be viewed as anomalous, undocile bodies that make the observer question their own learned understanding of the nature of pain. All of these painful expressions might frustrate the white scientific observer due to the fact they call into question a hierarchy based upon educational, as well as racial/ethnic/ableist privilege. Some medical practitioners seem to believe that their holding of a medical degree gives them better insight into a patient’s body and subjective feeling than the patients themselves. A suggestion I have to medical practitioners is to listen, explore all options for every patient, and when pain is not vocalized, think outside of your own range of experience.

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