Men living with long term conditions: exploring gender and improving social care

Disabled men have traditionally been seen as incomplete men or as entirely gender-less. Research which has looked at the intersection of disability and male gender has largely treated disabled men as a homogenous group with little reference to, for example, impairment related differences. The ongoing move towards self-directed, personalised social care in England suggests that support needs relating to gender may be taken more seriously. A qualitative study with 20 men with Duchenne muscular dystrophy (DMD) in England in 2013 explored the men’s experiences of the organisation and delivery of social care as it pertained to their sense of being men. Our main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. More often than not the organisation and delivery of social care people de-gendered or emasculated many of the men who took part in the study. Our paper speaks to the need to explore impairment specific issues for disabled men; to deliver a more person centred approach to social care which recognises the importance of the social and sexual lives of disabled men; and to create ways in which men can support and empower each other to assert essential human rights relating to independence, dignity and liberty.