Many groups of disabled people with long term conditions are living longer and there is growing research interest in their social (rather than medical) needs. However, as the authors of this study explain disabled people tend to be treated homogenously, particularly in relation to gender and with little reference to impairment specific issues.
This study talked to young men living with Duchenne muscular dystrophy (DMD) to better understand their experiences as well as to draw generalizable lessons ‘for the wider community of men with long term conditions who use social care services and supports’.
Significant improvements in medical care and support has increased the life expectancy of men living with DMD from late teens to late twenties. Services have been slow to catch up with planning for ‘unanticipated’ adult lives with the result men with DMD ‘may well not have been supported to be and become men either’.
This study explores what ‘successful manhood’ is to this group of young men highlighting the challenges for social care to deliver more person centred care that recognises the importance of their social and sexual lives.
This project was a partnership between an academic research group the Norah Fry Research Centre at the University of Bristol, a film maker and researcher living with DMD and the Duchenne Family Support Group.
Following a small pilot with men with DMD a further 20 men with DMD were interviewed. All the men lived in England and were aged between 21 and 33 years. The recorded, transcribed and subject to thematic analysis.
The analysis was supported by a 2-day meeting where international experts were invited to comment on the emerging themes. The authors wanted to identify key messages for policy and practice as well as develop more theoretical thinking around disability and masculinity.
The authors acknowledge this is a small scale study and that men living with DMD may not have experiences ‘akin to other groups of disabled men’. However, they suggest, and I would concur, that the study raises important broader questions for social care and contributes to a limited pool of research in this area where little is known ‘at a systemic level about the work carried out by support workers and personal assistants in social care settings’.
There was no real evidence that gendered needs were addressed at any stage of social care involvement despite the men in the study describing ‘a strong sense of male identity’.
Men’s gendered identity
The men who participated in the study talked being a man ‘in ways that arguably challenged stereotypes in a positive way’ encapsulated in the following quote
Because I’m disabled and I’m a man, I think you’re more of a man if you accept that you need help. That’s strength. It’s not a weakness. I need to accept care. I think that men use tools and stuff. Carers are like tools to help you in your life, really.
They highlighted ways in which they were similar and different from ‘ordinary’ men. Examples of similarities included being and wanting to be sexually active, cultivating self esteem through a range of activities like work, education and hobbies, and living independently.
Differences were often the result of disabling barriers and attitudes such as difficulties in attracting sexual/intimate partners, accessing paid employment, limitations and lack of flexibility in care and support and physical appearance and masculinity.
Organising and delivering social care support
There was no or very little attention paid to areas like intimate relationships, gender preferences and impairment effects of DMD (e.g. physical decline, loss of hand function). The men also talked about patronising interactions with staff when they sometimes felt ‘mothered’ or infantilised by the way in which care workers (who were providing the most intimate personal care) talked to and about them.
The authors noticed a ‘strong correlation between feeling like a man and the degree of choice and control participants had over their every day support’ although this was manifested in a variety of ways, for example one man lived with his parents and did not wish to move out (the cultural norm in his family), instead he talked about having ‘achieved states of independence in his mind and mindset by cultivating self-confidence and achieving goals’.
‘Restrictions on funding and availability of support staff to facilitate a social life and community participation’ was also a significant factor in restricting the men’s ‘sense of agency and emerging manhood’ and again was largely absent from discussions with social care.
Sex, body and intimacy
Intimate and sexual relationships were very important to the men in the study. Intimate care was part of everyday life and the majority of the participants did not have gender preferences for support staff, being treated with dignity was more important.
Most of the men required some support to ‘do’ sex, masturbation or intimacy with others. A small number paid for time with sex workers describing it as ‘a last resort in the absence of perceived opportunities for sexual relationships’.
The authors suggest discussing intimate topics with familial carers and care workers is made more difficult because the issues are ‘off the agenda in general’.
The authors conclude that
Social care in its broadest sense did little to support a positive sense of masculinity or male gender.
The strongest recommendation from the study was ‘the need for much more personalised discussion on support needs when assessing, delivering and reviewing support’ because for the men in the study ‘time is precious and sensitive topics need to be discussed’.
The authors recognise these are potentially challenging conversations for all involved and they provide examples of the sort of questions that may need to be addressed, some everyday and mundane, others more fundamental, but all ‘crucial aspects of manhood’. Failure to engage in these discussions constitutes a form of ‘psycho-emotional disablism’ (Liddiard 2014), ‘private experiences of oppression’ resulting from what people do (or don’t do) and say (and don’t say) in their interactions with disabled people (Reeve, 2014:94)
This is a sensitively produced project based on a strong working relationship between a well-established research centre and an independent researcher living with DMD and a national charity run by families affected by DMD. As such it has a strong grounding in the lived experiences and aspirations of people living with MDM and accountability to them. This is to be commended and encouraged in social care research.
Abbot, D. Jepson, M and Hastie, J. (2015) ‘Men living with long-term conditions: exploring gender and improving social care’ Health and Social Care in the Community doi 10.1111/hsc.12222 [Abstract]
There is also a project outline Supporting men with long-term conditions [Full text]
Liddiard, K. (2014) ‘The work of disabled identities in intimate relationships’ Disability & Society 29 115-128. [Abstract]
Reeve, D. (2014) ‘Psycho-emotional Disablism and Internalised Oppression’ in Swain, J. et al (eds.) Disabling Barriers –Enabling Environments 3rd Edition. London: Sage [Pre-print]