Disabled men are being subjected to “emasculating” and “patronising” treatment by social care services, new research has found.

The Bristol University study of men with Duchenne Muscular Distrophy (DMD), a neuromuscular disease that primarily affects boys and men, found that “gendered needs around personal care, social opportunities, sex and sexuality were almost never addressed in assessments, support planning and reviews or in day-today practice”.

One participant said: “It’s not even gender neutral, because gender’s not even in there. It’s asexual, basically, approach to social care, in my experience. I think the actual impact of social care can be incredibly emasculating, if it is set up in such a way that it takes away your independence and your autonomy — that is incredibly emasculating.”

The report found “examples of men experiencing patronising interactions and perceptions including: assumptions by a range of health and social care professionals that the men would not be interested in fatherhood, marriage or that, if sexual, they would be heterosexual; and men being given soft toys and called ‘love’ by older, female carers”.

‘You look like a turtle sitting there’

One participant said: “A lot of the [agency] people work with children. So this one lady because I was in bed, and I was ready to get up, and I was just lying there, she said, ‘You look like a turtle, sitting there.’ She got me this stuffed turtle for my birthday! It’s like, really?”

The report was released alongside a video of personal testimonies of men suffering from DMD, describing how their condition affects their sense of masculinity.

Participants said they had a strong sense of male identity, typified by phrases like: “I think of myself as a normal bloke” and in particular made a strong correlation between how feeling like a man was bound up with the degree of choice and control they had over their everyday support.

The men also talked about constructions and perceptions of being a man which arguably challenged general male stereotypes in a positive way.

For example: “Maturity and self-awareness mattering more than muscles; understanding that being a man with DMD necessitates care and support; achieving states of independence (physical or mental) which may not necessarily involve moving out of the family home; emotional strength and maturity developed by facing some of the trials and challenges associated with living with DMD.”

‘A man isn’t defined by his muscles’

One man said: “I’d describe myself as a brave man. A man isn’t defined by his muscles, he’s defined by how mature he is. Because I’m disabled and I’m a man, I think you’re more of a man if you accept you need help. That’s strength.”

The report gives the following information about the condition: “DMD is an inherited neuromuscular disease which affects males (in about 1 in every 3,500 UK births.) By the age of 13, boys with DMD have generally lost the ability to walk independently. By the mid-teens there are other complications: curvature of the spine, respiratory difficulties and cardiac failure. The mean age of death without specialised treatment was 19 but during the last few years there have been significant improvements in the way DMD is managed. The mean age of death is continuing to rise as more effective medical interventions impact on the current generation of men who are reaching stages of adulthood that were, at the time of their childhood, largely unexpected and unplanned.”

By Dan Bell

Photo: zeevveez

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