A while back, I had two different meetings on the same day. They were different in so many ways but at the same time, they were also similar. In the first meeting, I was discussing ways that AI can be used for persons living with Parkinson’s disease (PD) with researchers in medicine and technology. The second meeting was with researchers in philosophy and history of science. We were also discussing the possibilities of AI for people living with different forms of disabilities and PD was one of the examples.

During the second meeting, I suddenly felt a strong sense of unease and at first I didn’t understand why. This second meeting was so much more inclusive and positive so it didn’t make any sense for me to feel this way. When examining that sensation a bit more, I realised that it was not the second meeting I was reacting to, it was the similarities and differences between the two meetings that had struck me. The attitudes in the two meetings were radically different and this disconnect led to my strong reaction. Even though I was the same person in both meetings with the same knowledge, diagnosis, competencies, and experiences, to these different groups of researchers I was perceived very differently. To the medical/technical researchers, me and my PD were seen as a problem to be solved, and to the philosophers, it was a life to be lived.

The medical model vs the social model

Even though this contrast was new to me, it is in no way new to the world. It is of course well-known that researchers LOVE models, and I was happy when I came across descriptions of two (or three, or four, depending on how many you want) different models for how disability (or impairment, or …) is perceived. Here, I will focus on the two most often mentioned: the medical model and the social model.

The medical and social models of disability are both used to conceptualize and describe the phenomenon of disability. They do however differ in where they locate the “problem” or the logic underpinning each model. The medical model understands disability as an individual condition: an impairment or abnormality that should be treated, managed, or cured by healthcare professionals, often with the help of technology of some sort. Within this view, the focus is on what is wrong with the person, and the solution lies in medical (and/or technical) interventions. This approach can definitely be valuable for addressing symptoms and improving function. For example, I would say that the several different medications that I rely on for my body to function are a direct result of the medical model, and for that I am deeply grateful.

At the same time, in the medical model, deviation from the norm is seen as something undesirable. Over time, this framing can lead to learned helplessness, dependency on professionals, and even discrimination.

In contrast, the social model locates disability not in the individual but in society. It argues that people are disabled as a result of environmental, attitudinal, and structural barriers—such as inaccessible buildings, poor communication, or discriminatory attitudes—rather than by their impairments themselves. From this perspective, the solution is not to “fix” the person but to change society by removing barriers and creating inclusive conditions. This approach emphasises autonomy, participation, choice, and equal rights.

The social model of disability is valuable for highlighting how societal barriers create exclusion, but at the same time, it can underplay the lived reality of illness, pain, and impairment, especially in chronic or progressive conditions. On its own, it offers limited guidance for clinical care and may risk overlooking the fact that many people need both medical support and social change to live a good life.

What happens when you want to be a spetspatient?

In healthcare, the medical model is often dominant and for me, this raises an important question: What happens when you insist on being both someone who benefits from medical science and someone whose life cannot be reduced to a technical problem? What happens when you want to take an active role in your own life and care, simply put, a spetspatient (for more on spetspatients, see for example here, here, and here).

Patient empowerment, autonomy, and selfcare are interpreted quite differently within the medical and social models of disability. Within the medical model, empowerment and selfcare are often framed as compliance or self-management: the patient is empowered by healthcare professionals so they can follow treatment plans, monitor symptoms, and make appropriate health-related decisions within a professional framework. Autonomy exists, but it is bounded by medical expertise, and selfcare is typically seen as something that supports clinical goals such as symptom control, adherence, and risk reduction.

In the social model, empowerment and autonomy are more fundamental concepts. Empowerment means having control over one’s life, choices, and participation in society, not merely managing a condition. Selfcare is understood more broadly as the ability to live well on one’s own terms, supported by accessible environments, social inclusion, and respect for lived experience. Here, autonomy is not granted by professionals but enabled by the removal of barriers and recognition of the person’s agency.

Taken together, this highlights a key tension: the medical model tends to see empowerment as something that happens within healthcare, while the social model sees it as something that happens despite healthcare structures. In practice, meaningful empowerment usually requires elements of both—medical support that respects expertise by experience, and social conditions that allow people to exercise real choice and control in their daily lives.

In conclusion

That day, moving between two meetings, I realised that the tension I felt was not a contradiction to be resolved, but rather a reflection of something deeper and more profound. PD is, at the same time, a medical condition that benefits from research, technology, and treatment — and a life condition that shapes identity, relationships, priorities, and meaning.

For me, the real challenge is not choosing between seeing PD as a problem to be solved OR a life to be lived, but rather learning to hold both perspectives at the same time. I will continue to insist on being seen as an autonomous person with health challenges that need addressing for me to be able to live a good life in the presence of several complex chronic conditions. To get appropriate help from healthcare when I need it. To learn to ask for and accept help without being reduced to only a problem. To seek solutions without losing sight of the full complexity of life. In short: I will continue to be a proud spetspatient!