Do keeping professional boundaries and promoting autonomy risk denying people emotional connections that are an essential part of being human? Anthropologist Carys Banks fears so
When we think about empowerment in the lives of people with learning disabilities, what do we really mean?
If we think of empowerment in the sense of liberal individualism – of autonomy and self-determination – this can be described as the capacity of a rational individual to make an informed, un-coerced decision.
Conversely, at what point should people with learning disabilities be stopped from doing something they want to because it is considered unwise or unsafe? How far can acts of protective intervention be taken before legitimate coercion to keep people safe becomes a violation of their liberty?
These questions are of interest to me because they came to form the focus of my doctoral research in which I explored how such values are played out in the lives of people with learning disabilities.
Although the aims of current policy to empower people with learning disabilities are benevolent, there are negative implications of focusing heavily on liberal individualism; we may unintentionally be depriving such vulnerable people of important emotional connections.
Certainly, the basis of these questions has been a central component of Anglo-American and European political philosophy and social-legal thought for hundreds of years. In turn, from the middle of the 20th century, these ideas have shaped learning disability policy and practice in the UK, as well as in services in other nations that define themselves as liberal and social democracies.
The impetus largely boils down to determining how ‘the good life’, as philosophers have called it, might be achieved for both individuals and society at large, the definition of which has come to encompass a variety of forms.
Liberal ideas of what it means to live well have, in the last half century, become inextricably entwined with the management and delivery of professional care that some people with learning disabilities require every day.
Perhaps most notably in recent decades, such ideas have formed the basis of the theoretical approach of the social model of disability which, as well as acting as a counter to the dominance of the medical model that tended to define people too heavily by their pathology, has also called for people with disabilities to have access to the same opportunities as those generally available to other citizens.
Independent aims
Yet this kind of approach to achieving the good life is not without its problems, particularly regarding equality, as such ideas require individuals to have the understanding and resources needed to flourish. If these aspirations cause problems for the general population, it is reasonable to expect they will present more difficulties for others, such as those with learning disabilities, who experience cognitive and sometimes physical impairments, which, depending on the severity of their condition, will arguably affect their ability to empower themselves in these ways.
From this point, an inherent tension exists in learning disability social care policy. How can independence and community inclusion be promoted for people when their condition means that, in varying ways, they are eligible for and require support to manage aspects of their lives? This tension was the central focus of my research.
Broadly, my research interests span health and social care support for people with learning disabilities. I am particularly interested in relations of care and what care in the lives of people with learning disabilities might indicate about the human experience.
I spent 10 months in learning disability support settings provided by two community organisations in south-west England. To observe how the consequences of government policy were experienced, I spent time with people with learning disabilities and those supporting them in a range of places, including supported living and residential care, as well as daytime services such as day centres and employment training. I also spent time with third-sector bodies, including an advocacy group and a community church group.
I explored how government policies that are shaped by liberal notions of individual autonomy and self-determination are experienced in the everyday. The narratives of three young men in particular illustrate well the tensions between policy intended to equip young people with learning disabilities with all the opportunities afforded to others of a similar age and the reality that, as people with learning disabilities, they could at times be highly vulnerable and reliant on others around them for support. The three men – Mark Whyatt, Joey Tammer and Sam Treadwell* – were in their 20s and living together in supported accommodation.
I saw how the three young men often struggled to achieve independence and community inclusion. So much of this appeared to be down to the limits their condition placed on them. Without staff support, they tended to be unable to do many things, such as cleaning, paying household bills, going to the shops and organising general aspects of life.
I also saw tensions and conflict develop between the young men and their support workers, who would tirelessly attempt to get them to engage in domestic duties. These activities were not always of interest to the men but staff saw them as important markers of living a normal life.
Elsewhere, there was at times a focus on the young men getting jobs in the community, but these aspirations were not realised as their needs relating to their learning disabilities meant they could not perform tasks the roles required. Unfortunately too, because they were considered to be working towards independence, the funded hours of support provided were not enough to allow some hours to be allocated to support them in carrying out tasks required in a job.
Social and emotional connection
In addition to trying to shape people as responsible and engaged citizens, policy imperatives shaped social relations between individuals with learning disabilities and their support workers. This was played out as the young men tried to engage with workers as friends, asking them to go for coffee or to the cinema.
Perhaps more affecting was when I saw how the young men attempted to engage emotionally with their support workers in a physical sense. When out and about in the community with the men and their support workers, I would regularly see how they would try to take a support worker’s hand.
At an employment training service at a local farm I regularly attended with two of the men, they would attempt to engage their support workers in hugs. Generally, when this happened, I would watch as workers quickly pulled their hands away or refused to reciprocate in a hug.
The three men also attempted to engage with me in these physical ways. I recall one day at the employment training service when one of them leant his head against my shoulder. I considered trying to ignore this. I felt conflicted as to how to respond: on one hand, I was aware these kinds of interactions were not generally permitted yet, on the other, I felt compelled to respond to what felt like a strong need for emotional connection and reassurance from another human being. I responded and put my arm around him.
At this point, a staff member walked past, saw this and, after telling the young man he knew he should not be doing that, turned to me and warned me that he might ‘get the wrong idea’.
Ability versus aspiration
In the examples above, I have tried to illustrate the tension between the policy goals of independence and community living and the problems people with learning disabilities can experience in achieving these.
Quite often, I found people’s intellectual and, for some, physical impairments appeared so embodied that it would be very difficult if not impossible for them to achieve these aspirations. In contrast, it was emotional connections that people with learning disabilities tended to seek from those around them, who were mainly support workers.
Boundaries become barriers
At an organisational level, calls by the young men for emotional connectedness with support workers were viewed as inappropriate, particularly when manifested physically. This was because they transgress the boundaries of professionalism that have become the defining means by which health and social care staff are expected to relate to the people they support.
Just as I felt conflicted, there were times when staff also appeared to struggle with how to respond to requests to hold hands and for embraces from those they supported. When faced with the vulnerability of those in front of them, workers would sometimes momentarily transgress professional boundaries and respond to calls for physical contact. However, these responses were not enough to have a significant impact on how such interactions were perceived more generally.
The need to create distinct, professional boundaries between staff and people in receipt of support has a logical basis. It enables support to be transparent and accountable, ensuring that vulnerable people are not exploited or, at worst, seriously abused. Furthermore, placing the person at the centre of support relates to concerns about paternalism and its limiting effect on self-empowerment, autonomy and the right to be active citizens. As such, staff are discouraged from engaging emotionally with people they support.
These concerns are valid and important, particularly in the context of learning disability care in which many people were Ð and still are – unnecessarily detained in segregated and poorly maintained settings. Yet, in focusing so much on transactional concepts of support and individual autonomy, we might inadvertently be ignoring an inherent human need to feel connected to others.
For people with learning disabilities, who tend to have limited social networks, the ability to engage in an emotional sense with the people they see most days Ð their support staff Ð is arguably crucial. You could argue that no amount of independent freedom is meaningful if you do not also have access to the kinds of intimate relations with others that make life emotionally meaningful.
*Names have been changed
Dr Carys Banks is an anthropologist at the University of Surrey. Her work explores relations of care between people with learning disabilities and staff supporting them. She was the 2016 recipient of the Radcliffe Brown/Sutasoma award from the Royal Anthropological Institute
Further reading
Banks C (2018) Are People with Learning Disabilities Really Being Empowered?: an Ethnography Exploring Experiences of Empowerment Policies in UK Social Care Support. PhD thesis. http://tinyurl.com/y4zhofmy
