In this blog, I want to revisit the issue of the impact my professional privilege and power, in the clinical space, has on services users. My current research interest focuses on caring masculinities amongst Irish fathers of children with a disability. I originally set out to explore these father’s caring experiences, through a critical theory, that challenges notions of epistemic privilege and professional knowledge, through the writings of Foucault and Bourdieu. Over time, I reflected on whether using a critical theoretical framework was the right framework to explore participant’s accounts.
My change of theoretical framework was largely down to reading Mary Allen (UCD Social Work) article Feminist Social Work; Myth, Reality or Remote Possibility (Allen 2013). Allen (2013) argued, while critical social work emerged from radical social tradition, it was seen to merge with feminist and anti-racist and other anti-discriminatory practices. In considering how I might try to revisit these father’s narratives, critically, I reflected on whether I needed to focus on parent’s experiences of structural problems in the clinical space due to epistemic privilege and knowledge?
In away, looking at fathers accounts of inequality through their experiences of epistemic privilege and professional’s knowledge was a safe route to writing and frame their caring experiences. However, the father’s narratives were not as simple as us and them battle. What I needed to do is move beyond very raw and emotional narratives of the experiences of the clinic space and professionals. As father’s discussed their caring involvement and advocacy, I got a sense their experiences were accounts of their moral agency and caring through their view of parenting responsibilities and how they and others cared for their child, more so than battles and conflict.
In revisiting their narratives through moral accounts of caring, I changed the focus on my analysis through post-modern theories that could view such structural obstacles and inequalities, to a more nuanced approach. I turned to feminist theories that could frame these father’s experiences through moral outlooks (Fook 2002). The research now sought out the moral context to explore their narratives of parenting/caring. Parents challenges to professional’s knowledge, certainties about disability and outcomes are often framed as negative in pathological language; seen as not able to cope with burdened of their caring responsibility.
One such moral discourse; moral distress, had potential to frame their voices and views closer to their experiences. Andrew Jameton (1984) defined “moral distress” as a phenomenon. Moral Distress is an umbrella concept that describes the psychological, emotional and physiological suffering that may be experienced when we act in a way that is inconsistent with deeply held ethical values, principles or moral commitments (Mc Carthy 2013, Epstein 2010). Moral distress in social work has explored it within the context of case management work. Lynch (2016) argued moral distress was seen to occur when there is clearly a right course of action and the social worker is unable to take that action because of institutional or agency policy constraints.
But the implications of moral distress can run deeper and is a framework social workers could use to revisit patients experiences of the experiences of care and inequalities (Janssen 2016). Nursing research has used moral distress to explore patient’s experiences of institutions. Varcoe (2008) research explored the impact of care on patients that were distressing, ranging from lack of professional’s competency and witnessing unnecessary suffering. Varcoe (2008) study argued moral distress should not be viewed as an ‘inability to act’, rather it, should be seen as a relational concept that takes into account contexts of practice and power dynamics.
For me, the clinic is and always be a very unequal space. This inequality stems from my epistemic privilege and reinforced by hierarchies of knowledge. Assessment and interventions are akin to a sense of medical surveillance and the focus on the label and not their child (Goodley 2008, Snyder 2006). This privilege in the clinic is reinforced by the dependence the parent and child has on professional knowledge to access services. For me, this is the start of the experiences of moral distress. A father’s account of being given the diagnosis was one of a collection of distressing experiences for them, being given the diagnosis and re-labeling their child.
So like, we all came to that conclusion, maybe someone, somewhere should stop and look at that final part of it and say look we need to be a little more sympathetic to the parents but I, my feeling that day and probably for three to four months after it, even six months or even longer; he was dead. I know that sounds a bit erm but they had taken my child as a three-year-old and taken three years that I knew previously and just wiped him out and landed this new child in front of me and that was devastating…
Over time the parents felt (epistemically) exploited as the professionals understanding over toke the relationships with the child rather than the child’s needs. One father described such experiences of moral distress due to this epistemic privilege and preparing for assessments. They needed to paint to most negative/deficit view of their child to access services. This experience needing to get someone else, a practitioner, to view of their child different for the purpose an assessment tool, was morally distress and wrong to the father. Why did the system, and professional, need to see their child different, and label them so, in order to access supports and services that should be universal;
So we discovered then at that point as well is that, and it is a very very tough one and we even had it there now recently with a Psychologist friend when moving to a new school, you have to paint a worse case scenario for your child or you get nothing (an emphasis in the participant’s voice and slowly stressed) and it is, that is so so hard, he (pause), he is one of four kids (pause), he slots into our house and if I have to give out to any of them, I would give out to him similar to the other lads.
Over time, the fathers and their family developed their own knowledge about what was best for their child. All was not lost from these father’s accounts of moral distress. Fathers developed a certain moral resilience as advocates and carers, through their view of what was good care and support. Questioning of the professional’s and services’ competency to meet their child’s needs was not a battle for the father. For this father, he and his family looked at a balance between the interventions and meeting their child’s needs.
Oh yes. I wouldn’t feel guilty about not doing it sometimes cause I think there are people who get over-involved and in life, there is a degree of neglect that children need. Let them at it and let them get dirty. You know, I am not saying that in any way that you could get, we would upset ourselves by the fact that child wasn’t progressing I suppose with all the work we would put in. It is very difficult and people get worried about it and people try to educate the, and I am speaking very generally here, people would try and they would say I must put a lot of and they are trying to educate the Down Syndrome out of the child. That there is a corrosive effect on families, you need to balance out the whole thing and be fairly deliberate in the way we would do things, you know and we did have two other children that needed to be minded, you know and they were brought into the whole equation and bring her along too. But you can get into a situation where you can let this take over your whole life and I wouldn’t like that too happen. So I have my own life like this has happened and you do your best and to beat yourself up and you do beat yourself up every so often but Jaysus you got a deal with it.
It was an assessment of competency, which they had developed through their experiences of moral distress. Challenges to the professionals and services to care for their child were rooted in the father’s sense of moral agency. While initially drawn from a fear, stemming from moral distress. Evaluating the professional’s ethical competency to care for their child were teased out through the parent’s sense of whether these professionals had caring skills of attentiveness and responsiveness to meet their child’s needs (McLaughlin 2008). Fathers were quicker to address with the professional where they were failing to recognize their child, as a child, or seen not to act on behalf of their child in these caring relationships (Bowden, 1997). For this father, the families knowledge of how best to meet his child’s needs was central to how he nor only judged the competency of the professionals/services but also reduce his experiences of moral distress.
It has been quite good, eh. I have had let’s say personal conflicts with some of the therapists. I just sometimes feel they don’t really listen, that some of them prefer to talk to you than listen to you. That annoys me cause you know we are both intelligent people and like we know what is going on. We know our daughter than anybody else does and sometimes there is just little things that you are trying to get through to them and they are kind of gone off on their own agenda and they did not listen.
Conclusion:
My research aimed to revisit the parent’s experiences of such structural inequalities between them and professionals/services, not through critical theory, but a moral framework. Participants were distressed at the risk of therapeutic nihilism and diagnostic overshadowing when the professional’s knowledge became more important than the material embodiment of the person and those caring for them (Hayles, 1999). Fathers became increasingly insightful of the moral distress such oppressive experiences of working with professionals and services had on them, their family but most importantly their children.
Framing these fathers through moral framework; moral distress, we begin to hear service users experiences differently. In this research experience, I was reminded on a criticism of social model of disability, which was seen to deny the experience of our own bodies insisting that our physical differences and restrictions are entirely socially created (Morris 1991). The absence of individual experiences of structural obstacles and inequalities, limits our understanding of living with a disability, whether it be the person or their family members. Therefore when professionals are challenged, it easier to fall back on safe pathological discourses of stress, rather than understand the distress they are experiences from our power/privilege.
Irish Social Work 