Cerebral palsy: more than a definition?
In this blog post, Mac Keith Press authors, Martin Gough & Adam Shortland examine the definition of cerebral palsy. The emphasis of the piece is on cerebral palsy’s variation from person to person and that its presence is not captured by a single definition or description
What do we mean by the terms ‘disease’ or ‘condition’? Cohen (1953) suggested that there are two main disease concepts. Disease may be viewed as a distinct entity, so that if a person A has a disease they become ‘A plus B’, where ‘B’ is a disease. Disease may also be viewed as a deviation from a perceived ‘normality’ due to a number of factors (x1, x2, x3…). The attraction of Cohen’s first concept may be the implicit possibility of a disease-free state or ‘cure’: if a disease is viewed as ‘A plus B’ then removal of ‘B’ with a resulting restoration of ‘A’ is theoretically possible. This concept may involve an assumed anatomical localisation of ‘B’ which may then become the target of therapeutic intervention. An ‘A plus B’ concept of person and disease, together with an assumed anatomical localisation of ‘B’, may explain the clinical concept and approach to spasticity in children with cerebral palsy. Cohen’s second concept, that of disease as a deviation from a perceived ‘normality’, may be represented in the context of children with cerebral palsy by the popular concept of the potential normative power of ‘plasticity’: in this situation however, there is an implicit assumption that rather than true ‘plasticity,’ any changes that occur will be in a positive direction only and will act to restore the expected normative development of the child.
Baron (1981) noted that the medical paradigm may be seen as a functional abstraction with three basic elements: ‘a physician, a patient, and a disease… which each come to be seen as fundamental elements in and of themselves’: ‘physicians then look through their patients to discover the underlying pure disease….what starts out as a heuristic model becomes an ontological fallacy’. This view was shared by Foucault (2003): ‘Paradoxically, in relation to that which he is suffering from, the patient is only an external fact: the medical reading must take him into account only to place him in parentheses’.
A definition of cerebral palsy as a condition which is somehow separate from the child, and which focuses on the ‘what it is’ of cerebral palsy, can obscure the child’s experience (or the ‘that it is’) of cerebral palsy which exceeds and is not captured by our definition and is in this way idiotic. This concept of idiocy (Desmond 2012) is derived from the Greek ‘idios’ which means “one’s own, personal, private”, with the noun “idiotes” indicating a private person. Cerebral palsy can be seen as idiotic in that it is a unique or singular experience for each child which cannot be fully determined or captured by any definition we use.
This would seem to be an intellectual impasse: we seem to be defining cerebral palsy as something which cannot be defined. This approach would seem to support Cohen’s comment that ‘Philosophical enquiry in medicine is apt to be regarded as an arduous eccentricity’. And yet, philosophy does have an approach to offer. Levinas (1979) commented that ‘Western philosophy has most often been an ontology: a reduction of the other to the same’. By this, he meant that in defining what things are, we change them from being ‘other’, something that we cannot know, and instead make them part of our understanding by objectifying them as ‘same’. He suggested that our view of what we consider as known (‘the same’) is challenged by experiencing another person: ‘a calling into question of the same – which cannot occur within the egoist spontaneity of the same – is brought about by the other. We name this calling into question of my spontaneity by the presence of the other ethics’. This can seem somewhat abstract until we think about an encounter with a child with cerebral palsy: before and beyond any description, diagnosis or classification we can offer is our immediate awareness of the presence of a unique or singular other person.
An ethical approach (to use Levinas’ term) which accepts the singularity of each child with cerebral palsy is intuitively attractive but may make clinical management more of a challenge: if each child is unique, how do we use concepts such as ‘cerebral palsy’? Derrida (2003), another philosopher, wrote that ‘Ethics start when you don’t know what to do, when there is this gap between knowledge and action, and you have to take responsibility for inventing the new rule which doesn’t exist….An ethics with guarantees is not an ethics….Ethics is dangerous’. We have a choice: we can take an ontological approach where we define cerebral palsy as an independent entity and face the challenge of making each child fit the definition, or an ethical approach where we focus on the child’s experience of the world and on our experience of the child, and work from there. Ethics may be more dangerous and involve more responsibility, but seems to offer the child and the clinician far more.
Cohen H. The evolution of the concept of disease. Proc Roy Soc Med 48:155-160, 1953.
Baron RJ. Bridging clinical distance: an empathic rediscovery of the known. J Med Phil 6:5-23, 1981.
Foucault M. The Birth of the Clinic: p9: translation by AM Sheridan; Routledge, Oxford, 2003.
Desmond W. The William Desmond Reader: p47; edited and with an introduction by CB Simpson. State University of New York Press, Albany, 2012.
Levinas E. Totality and Infinity: an Essay on Exteriority: p43: translated by A Lingis. Martinus Nijhoff Publishers, The Hague, 1979.
Derrida J. Following Theory, p31-32 (in) life. after. theory. Edited by Payne M, Schad J, Continuum, London 2003.
Martin Gough & Adam Shortland May 2022
Martin Gough and Adam Shortland’s The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management is out now. The title challenges conceptions and current practices about the child with cerebral palsy to offer a new perspective and alternative clinical model. Promising to offer a real paradigm-shift in the ways we think about cerebral palsy, this book will be a critical resource for clinicians and researchers involved in the care of children with cerebral palsy including neurologists, physical therapists, orthopaedic surgeons, and neurosurgeons, as well as researchers and clinicians in the philosophy of medicine.
Martin Gough trained in orthopaedics in Ireland where he developed an interest in the orthopaedic management of children with cerebral palsy and in gait analysis. Following fellowship experience in Toronto, he was appointed as consultant in paediatric orthopaedics at the Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, in 1998, where he was able to combine these interests as part of the team in the One Small Step Gait Laboratory.
Adam is in receipt of an award from the leading UK children’s charity, SpARKs (Sports Aiding Research for Kids) for his contributions to medical research. Adam is the director of an MSc in Clinical Engineering at King’s College London. It forms part of a unique programme of training to bring people with a background in the physical sciences into clinical practice. He is reader (Associate Professor), King’s College London.