Essay: A question of normality – Juan Toro explains his Ph.D.

For the last three years Juan Toro, Researcher at Enactlab S/I and Ph.D. student at the University of Copenhagen, has been studying normality within a philosophical framework. 

Juan Toro points out that we need to think about normality in relation to an optimal way to live our lives, this also applies in the context of disability.

His research has led him to question the concept of normality, when it comes to how we apply it to people with physical disabilities.

By Juan Toro, Researcher at Enactlab S/I and Ph.D. student at the University of Copenhagen

For a long time, there has been a close connection between the notions of abnormality and disability. The medical model of disability conceives the body of the person with a disability as an abnormal body, that is, a body that deviates from the normal.

Underlying these notions of normality, abnormality and disability, we find the notion of average. The average is a very useful notion for the medical sciences, as it allows for them to establish in objective terms how much a specific parameter in the person’s body deviates from the normal.

Then, by determining the deviation from a certain bodily function or structure, the medical doctor can establish in objective terms how much a person’s body is abnormal and, therefore, disabled.

Based on such diagnostics, it is possible to design a specific treatment aiming at the ideal of bringing the person ‘back to normal’.

There are many interrelated problems with this conception.

Does an impairment count as a disability?
The medical model conceives the person’s body as only a physiological body, that can be described in terms of functions. Based on this conception, the notion of disability is reduced to that of impairment of specific functions of a physiological body. However, when can we say that an impairment counts as a disability?

A representative of the medical model would answer: When it deviates considerably from the normal function. If we keep asking: But how much is considerable deviation? How do we distinguish the normal from the abnormal body?

Where should we draw the line that distinguishes them? It becomes evident that the distinction that medicine –and the medical model of disability – makes between the normal and the abnormal based on the notion of average is arbitrary. And it will never be anything less than arbitrary if medicine proceeds the way it does in relation to physical disabilities: by reducing a person to a physiological body.

Juan Toro conducting an experiment about interaction during his Ph.D.

Disability – normal or pathological?
Georges Canguilhem – a medical doctor and a philosopher – claims that a person in good health feels “more than normal – that is, adapted to the environment and its demands – but normative, capable of following new norms of life”.

This means that a healthy person feels that she can do things in a different manner if the situation demands it. For instance, if the person is forced to live at a higher altitude, she must change her diet, there is less oxygen in the air, and so on. If she can change her way of life to adapt to the new circumstances, she is in good health.

The person in a pathological state, on the other hand, feels she needs to keep everything stable: every change can be catastrophic for her.

Physical disabilities, according to this criterion, can’t be considered pathologies, as long as they don’t necessarily inhibit the person’s capacity to adapt to the environment and to explore  alternative ways of facing daily difficulties.

In an experiment we conducted at The Elsass Institute involving people with cerebral palsy, it was clear that they were capable and interested in trying different strategies to perform the tasks. They explored to see what the best way for them was to perform basic tasks with another person: how to pass a cup of water or lift a tray. They are normally embodied, according to this criterion.

Juan Toro conducting an experiment about interaction during his Ph.D.

How can we put these ideas into practice?
There are two areas in which this reflection on normality can be applied: healthcare for people with physical disabilities, and in understanding the effect of oppressive societies on people with disabilities.

In relation to healthcare for people with disabilities, it is clear that it should be focused not only on restoring the functionality to the impaired limbs or muscles, but mainly on restoring and expanding the person’s capacity to explore and develop alternative strategies to perform daily tasks and adapt to the environment. In order to do this, it is essential for healthcare professionals to work together with the person with a disability to orient rehabilitation to those activities that are most meaningful for them. At the Enactlab, and in collaboration with a healthcare institution, we have developed some essential guidelines for healthcare professionals to apply person-centered care principles.

Regarding oppression, my research points out that the effect of oppression on people with disabilities is that it undermines the person’s capacity to explore  new strategies and to develop an optimal way to deal with daily challenges. This means that oppressive societies push people with disabilities from ‘normal’ to ‘pathological’. There are two ways in which oppressive societies do this: by designing environments in which the specific needs of people with disabilities are disregarded, and through the stereotypes that are disseminated among people according to which people with disabilities are incapable and unreliable. These two forms of oppression operate in different ways, and it is important to understand and tackle each one in a different manner.