I HAVE EPILEPSY

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I have epilepsy. An anxiety-provoking sentence starter. A tick box on every application form. A lengthy list of restrictions. I find myself apologising for. 

 

Epilepsy has cast me as a character within its story. A story which has proven a slow and tortuous journey towards acceptance. Acceptance that epilepsy will always be a part of me. There will never be a respite, divorce or a potential settlement with this delusion in which I am trapped. Perhaps, epilepsy is a ledger of credits and deficits. Many cultures believe that those with epilepsy can act as conduits between this world and the next. A unique quirk. A sixth sense. A superpower. 

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Disabling Environments: Absences in Architectural Conditions is an auto-ethnographic exploration of the relationship between epilepsy, climate and the built environment. Confronted with an epilepsy diagnosis, at the age of 19, navigating architectural environments became disabling. Epilepsy, a word which derives from the Greek ‘to capture’ or ‘to seize’, perfectly describes how the condition temporarily takes hold of a person. Epileptic symptoms are induced by environments. Despite this, research is minimal. The thesis attempts to provide an eminently accessible insight into an often misunderstood chronic condition, document research and ignite critical conversation. To demonstrate the experience of living with epilepsy within the built environment, each of the three ‘epileptic episodes’, as opposed to chapters, were located in different case studies, each intentionally varying in scale and use. The episodes include 'Episode 1: Revisiting Chalfont: Epilepsy, the Neurological Conundrum’, ‘Episode 2: Chasing Consciousness: Dictating Lived Experiences at RIBA’ and Episode 3: Disabling Environments: A seizure at Chhatrapati Shivaji International Airport’. 

 

Expanding scholarly research will enable built environment professionals to creatively design, equipped with knowledge and disability at the forefront, applying a stronger focus on neurological conditions, which are largely influenced by human experience. This research investigates how the mind acquires spatial knowledge and the implications of this for architectural design. More specifically, it examines current research and practice regarding epilepsy and the built environment, drawing conclusions from primary experiences using various methodologies. It learns from directly engaging with people living with epilepsy and experts through conversation. During this process, it also explores impending issues such as climate change to develop a more holistic understanding of how the built environment can be designed and maintained to support and enhance the lives of those living with epilepsy. 

 

Founding President and Board Member Emeritus at the Academy of Neuroscience for Architecture (ANFA) in San Diego, John Eberhard highlights that ‘architecture is about the human experience of built space, which is something that happens in the brain: therefore, in recent years it has become relevant to consider how the discipline might be informed by emerging discoveries in the field of neuroscience’. These new developments must be incorporated into the evolving theory of the human and architecture, generating new scientific and philosophical insights regarding the mind and neurological conditions, such as epilepsy. Finally, the overall aim of this thesis is to provoke additional thinking and research on architectural variables which can adversely impact human health, and encourage neuro-inclusive design methods within architectural practice.