I am a collaborator on Waiting Times, a 5 year project funded by Wellcome Trust (with Exeter and Birkbeck).
Waiting is one of healthcare’s core experiences. It is there in the time it takes to access services; through the days, weeks, months or years needed for diagnoses; in the time that treatment takes; and in the elongated time-frames of recovery, relapse, remission and dying.Our project opens up what it means to wait in and for healthcare by examining lived experiences, representations and histories of delayed and impeded time.
My part of the project involves making a film with Ruairi Corr, who was diagnosed at six with a degenerative genetic disorder, Adrenoleukodystrophy (ALD), a disease linked to the X chromosome.
Ruairi lives a life that is structured around medical waiting. He is dependent on a wide range of care givers, and the support of his close family and their friends. Within this structure, he lives a full and busy life.
People with ALD experience visual impairments and have difficulty with hearing and information processing. These differences mean communication may be unusually slow, yet this slowness can create an atmosphere whereby people without ALD feel encouraged to adjust their tempos and communication to match the pace of life and thought of those with the disease.
In this film I want to find ways to capture something of Ruairi’s highly attuned multi-sensory engagement with the world through touch and sound.
As filming progressed, Ruairi began to shoot his own footage using a GoPro camera strapped to his body. He is now a collaborating cameraman (with Stuart Moore of Sundog Media) and is able to create his own record of his activities.