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The cases
Published in Chris Schelvan, Annabel Copeman, Jacky Davis, Annmarie Jeanes, Jane Young, Paediatric Radiology for MRCPCH and FRCR, 2020
Chris Schelvan, Annabel Copeman, Jacky Davis, Annmarie Jeanes, Jane Young
Incidence is 1 : 8000 and unilateral is more common than bilateral. 50% are associated with CHARGE syndrome (Coloboma, Heart disease, choanal Atresia, Retarded growth, Genital hypoplasia, Ear abnormalities). There is also an association with Treacher-Collins syndrome.
‘Never mind the bullocks’: animating the go-along interview through creative nonfiction
Published in Mobilities, 2021
Phase 2 involved in-depth one-to-one interviews with 31 people recruited from across England, with assistance from the Royal National Institute of the Blind ‘RNIB Connect’ magazine, the Thomas Pocklington Trust, Blind Veterans UK, the Macular Society, and several local sight loss organisations who raised awareness of the study through their member networks. Purposive sampling allowed individuals at different life stages, and with diverse forms of sight impairment, to contribute ‘information rich’ views to the study, rather than focusing solely on the ‘typical’ or average case (Flyvbjerg 2006). The sample included: 15 men, 16 women; ageing from mid-20s to mid-80s; living in rural areas, towns and cities; seven participants in full or part-time employment, 14 retired, 10 unemployed, and 18 engaged in volunteering. Participants described varied conditions influencing their field and clarity of vision, including colour, light, depth and object perception (glaucoma, age-related macular degeneration, retinitis pigmentosa, diabetic retinopathy, congenital cataracts, retinopathy of prematurity, Leber’s Congenital Amaurosis, Leber’s Hereditary Optic Neuropathy, coloboma, retinal detachment, rod-cone dystrophy, and sight loss caused by accident and/or brain injury). Of the 31 participants, 28 were registered severely sight impaired or sight impaired, and three were contemplating registration. Fifteen participants were born with at least one eye condition, including 12 people who had experienced further sight changes later in life. A limitation of the sample is its relative homogeneity in terms of race, ethnicity and cultural background, with 29 participants identifying as White British and two as Asian British. Despite introducing the study sample in this way, we are wary of flattening differences across participants with varying histories and fluid identities. Various aspects of our subjectivity ‘interconnect, assemble and perform, within and through our bodies’ (Olive 2018, 236) in diverse and dynamic ways as we move with and shape the shifting relational configurations of everyday places. Such processes cannot – and should not – be reduced to the influence of a single attribute defined in the language of impairment or deficit (Bolt 2016).