Revisiting Patient Organisations

Ylva Söderfeldt reflects on the history of patient organisations and raises questions about how to redefine the histories of patient activism

During the COVID-19 pandemic, the contradictory position of medicine in contemporary society has appeared more clearly than ever. One the one hand, it is now obvious to all of us the influence medical knowledge holds in the public sphere. We have seen how political reactions to warnings and recommendations from medical science came quickly and with tremendous force – whether it was quickly enough, or the right amount and type of force is another question. At the same time, calls to action from climate scientists have gone largely ignored. The same goes not just for the government level, but the sphere of personal preparedness. Clearly, most people across the world were remarkably willing to accept and self-enforce far-reaching restrictions to their personal freedom and daily lives when performed in the name of medical necessity. The same could probably not be said for other types of crises.

On the other hand, the COVID-19 experience also accelerated and made more visible the tendency to increased challenges, questioning, and outright rejection of medical science and regular clinical practice. For decades leading up to this pandemic, doctors have complained that their patients consult internet search engines and show up to the clinic with self-made diagnoses, or even circumvent mainstream medical outlets and knowledge and form alternative communities for unorthodox treatments and contested illness categories. During COVID-19, what had been fringe phenomena – e.g. conspiracy theories of Big Pharma, the state engineering disease, or anti-vaccine sentiments – became widely publicized and popular.

We seem to be at a moment where it is very unclear whether medicine is more powerful than ever – or if its power and authority is severely threatened. It is this ambiguity that inspired me to study patient organizations. I believe that understanding their historical role in shaping our medical landscape holds the key to understanding some of the key aspects of medical power today.

At Uppsala University, I am in the process of setting up a large-scale project called ActDisease to study the emergence and role of patient organizations as central actors in medicine in the 20th century. These organizations include allergics’ organizations that pushed for the acknowledgement of their ailments as somatic illnesses around 1900, diabetics’ associations that helped enable an advanced self-management regimen from the 1930s, and organizations for neurological diseases that coordinated rehabilitation resources in the 1950s. ActDisease seeks to understand how such organizations reshaped medical concepts and roles and in expanding the reach of medical modes of thought.

Previously, patient organizations have been studied in the context of the so-called ‘new social movements’ of the 1960s and 70s. The idea is that identity-driven movements – such as second-wave feminism, the student movement, the gay and lesbian liberation movement, and the disability rights movement – inspired people to organize both politically and in their capacity as patients to push for influence in decision-making processes, protection of personal and civil rights, and de-stigmatization. This is a plausible historical argument. Clearly many of the patient movements that have been studied so far, such as HIV/AIDS or breast cancer patients, are very much connected with other radical social movements of the late 20th century. However, in undertaking this new project, I seek to show that the phenomenon of organized patients as such cannot be explained simply as a result of those historical trends, especially because the first patient groups formed in the 19th century.

Furthermore, the focus on the late 20th century has distorted the larger epistemic framing of the patient organization phenomenon, making it appear more grassroots-based, more subversive, and critical than, I argue, it actually is. In fact, most patient organizations have been eager advocates for medicalization, and they have worked closely with medical establishments and the pharmaceutical industry to achieve better access to care and treatment. A general lack of awareness about this early context, I suggest, has fed into the dichotomy of medical power versus patient rights. In my thinking, this position obfuscates the position of medicine in society today. Through the ActDisease project, I hope to be able to present a new interpretation of the power relations in 20th century medicine.

About the author

Dr. Ylva Söderfeldt is a historian of medicine and director of Uppsala University’s Centre for Medical Humanities.

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