“The spin, I predict, will be ‘This is all the activists’ fault’”: Blame and assimilation in healthcare activism
In the UK, healthcare inequalities are rife: women, ethnic minority groups, and members of the LGBTQ+ community all face barriers that make it difficult to access good healthcare. This paints a picture of a system designed for a very narrow group of individuals: straight, white, British men. For everyone else, navigating the healthcare system requires a degree of assimilation: adapting yourself to a system that will not adapt to you. Assimilation can be a tool used by activists to gain credibility — but what happens when patients get more than they bargained for?
Historically, forced assimilation has been used to erase and manipulate marginalised groups — even in medicine. Take, for example, the treatment of Inuit tuberculosis patients in Canada in the mid-20th century. Under the guise of generously providing much-needed healthcare, Canadian authorities forcibly removed Inuit patients from their homes and detained them in hospitals. Many were mistreated; some never saw their families again. Masquerading as altruism, this system “aimed to remove, detain, assimilate, and eliminate” Indigenous people.
Although perhaps more covert, today’s ‘one-size-fits-all’ approach to medicine is another form of forced biological assimilation. A disproportionate amount of medical research is conducted on white men, but the findings of this research shape the care received by people of all walks of life. Women, with their pesky hormones, and ethnic minorities, whose biologies can be changed by racism, are forced to rely on treatments that were not designed for their bodies. By treating everyone as if they are medically the same, biological assimilation becomes an act of structural violence: when the needs of the vulnerable are ignored, the vulnerable become more vulnerable.
Marginalised patients know all too well that healthcare wasn’t designed for them, and many adapt accordingly. For example, US healthcare providers often assume that black patients are less intelligent, less compliant, and less sensitive to pain than their white counterparts. When navigating such a system, many black patients describe “getting dressed nicely before presenting to the emergency department” to “avoid judgment and receive better care”. By conforming to racist ideas of what a worthy patient looks like, black people are choosing — albeit under coercion — to use assimilation to their advantage.
Selective assimilation is not only used by individual patients. Activist groups from marginalised communities use this tactic to get their voices heard by doctors, pharmaceutical companies, and medical researchers. But these groups don’t assimilate by changing their clothes, or modifying their behaviour. Instead, they assimilate themselves into the scientific community by becoming experts in their own ailments.
Take, for example, AIDS activists in the US. AIDS, a disease predominantly affecting gay men, was poorly understood, and death rates were high. In the early 90s, scientists began to study a new treatment — a combination of therapies, called AZT and ddc. The hype around this research was fierce, but activists objected to the way scientists were conducting clinical trials. Until this point, the trials were done by splitting patients randomly into groups, treating some, and giving others a placebo. Researchers then waited to see how many patients in each group would die.
Many felt that this method of ‘body counts’ was cruel and unfair: no one wanted to be left to die in a control group. Activists pushed for a better way: conditionally approving new drugs, giving everyone treatment, and using a type of blood cell, called CD4, as a surrogate marker, to check that it worked. A surrogate marker is a biological indicator that’s connected to a particular health result. Just as blood pressure can indicate heart health, perhaps CD4 cells could indicate the life expectancy of a person with HIV. Acceptance of this method overhauled drug development systems in the US.
This transformation stemmed from a deceptively simple idea: patients wanted to be treated. But to researchers, activists were scary people with “earrings and funny hair”, and not a group worthy of respect. In order for their requests for treatment to be heard, activists had to assimilate themselves into the scientific community. They did so by becoming “methodologically astute”, “credible speakers” in science.
Activists knew that the changes they wanted were risky. But, they argued, these were risks that they were “entitled to assume”, if it meant fewer people died whilst waiting for research to finish. Sadly, these risks yielded little reward. Trials revealed that CD4 was not a good surrogate marker, and that the combination of AZT and ddc was no more effective than existing treatments. This news was devastating for patients, and many were concerned it would “fuel a backlash” to the changes brought about by patient activism. In the words of activist Larry Kramer: “The spin, I predict, will be ‘This is all the activists’ fault’”.
Therein lies the issue with activism by assimilation: patients can become experts, but they will never have the privilege of detachment. For AIDS activists, the consequences were of life and death, and the implications were two-fold: the trials they were counting on had failed, and they only had themselves to blame.
This situation is not unique to the AIDS crisis. In the same era, activism transformed the experiences of breast cancer patients by becoming experts in the treatment and environmental causes of the disease. In the 1970’s, patients experienced “isolation” and “disempowerment”, subject to the “sovereign power of physicians”. By the turn of the century, patients benefitted from “new social spaces, services and resources”, “growing visibility” and the “right to fully participate in medical decision-making”.
The public image of breast cancer patients had also changed. Patients were no longer victims, but “[brave]” and “[victorious]” women, whose “survival was… assured” by their “disciplined practice of ‘breast health’ and rigorous observation of screening guidelines”. But this raises an unsettling question: what about the women who don’t survive? Are they cowards, killed by their own lack of discipline? Once again, autonomy becomes responsibility. The ‘right to participate’ becomes ‘liability for the consequences’ when things go wrong.
Of course, activism is a vital tool for improving the experiences of patients. But by requiring patients to become experts in order to be listened to, we leave patients vulnerable to backlash and blame. This is a terrible burden to place on the already unwell. Patients should be able to assert their values, without the need to become experts, and without assuming responsibility for their own care. By failing to do more to protect patients, the medical community is reinforcing a structure that blames the ill for their own ailments.