Supporting people with intellectual disability and autism – resisting burnout and preventing sleepwalking: A conversation between systemically
minded psychologists Nina Viljoen, Helen Ellis-Caird, Louisa Rhodes and Annabel Head
Ethical intentions and the contexts in which we fi nd ourselves
We are four clinical psychologists working in services for
people with intellectual disabilities and autism. We are passionate and care deeply about what we do, but fi nd ourselves increasingly frustrated and disappointed by the constraints of the political context on our work. In what follows, we hope to refl ect on the disabling and disempowering practices we witness, and how we have found ourselves a part of these and transgressed our deeply held values. But we also want to share with you the shining light that has been the works of Vikki Reynolds. T ese have shown us diff erent ways to respond, and moved us from thoughts of burnout, to feeling inspired and energised. In her discussion of ethical intentions (Reynolds, 2011, 2012), she has given us a way to stand together, to consider our collective sustainability and to work towards a shared goal of social justice doing. T e circumstances of our work haven’t changed drastically, but what has changed is our recommitment to hope to renew and crucially to “enact our ethics” (2012, p. 21). But fi rst, it seems important to consider the history of the
living circumstances of people with intellectual disabilities and the current context of our work. It is no coincidence that the rise of institutions or asylums, as homes for people with intellectual disabilities, coincided with the industrial revolution. In this “new era of economy, discipline and productivity” (Gleeson, 2010, p. 6), people were seen and valued more and more through their ability to ‘contribute’ to society (Gleeson, 2010); meaning that “eventually, oſt en unwillingly, the emergent state had to accept responsibility for care of the ‘unproductive’” (p.6). Fast forward to the 20th century when deinstitutionalisation saw huge numbers of people moving out of such large-scale institutions, into smaller (or not so small) set ings in the community. While overall a positive step for many people, the impact of neo-liberal policies on how such homes were built, developed and run, meant that a necessity for fi nancial profi ts oſt en overtook maximising the quality of life for residents (Mansell, 2006). It is to people with intellectual disabilities living in such homes that we as professionals are so oſt en called to ‘intervene’.
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To ‘fi x’ the problems of challenging behaviour, of self-harm, of mental health problems that are located within our clients rather than in the layers of systems in which they live. Just our presence, as NHS and social-care professionals, may overtly or covertly reinforce ideas that people with intellectual disabilities need to be ‘managed’ (Johnson, 1998) or treated – aſt er all, why would the NHS see anyone if not to treat them, medically or otherwise? In these paradigms, we the professionals are inevitably powerful, and those we treat or support or manage hold less power. T is is even more the case for those who are otherwise marginalised by society. People with intellectual disabilities continue to fi nd themselves at the mercy of policies and regulations in which they oſt en have very lit le, if any, say. Despite these startling inequalities and power hierarchies,
the powerful systems in which we work are mostly able to keep our service users at the heart of the work, strengthened by the incredible ethical commitment of the many diff erent professionals at work. But when these systems come under undue pressure, as they are at present, the ability to hold the client at the centre can be strained. In circumstances where resources are becoming increasingly scarce, services are invited to adopt practices that can make it diffi cult to be with clients, at a pace that allows for a meaningful connection.
Sleepwalking into practices that transgress our values
We strongly agree with Reynolds when she says that no
professional comes into this work to do harm to clients (Reynolds, 2011, 2012), but it’s still possible in these strained circumstances for us to ‘sleepwalk’ into practices that no longer represent our values. For example, we can lose sight of how our services contribute to disablement and locate this in our clients, or accept eligibility criteria as truths rather than constructs. If we think of our ethics as things that we ‘just have’ rather than as practices that we must constantly enact, then complacency, high workload, and busyness can lead to our ethics ‘slipping’.… In trying to describe how this can happen, Helen talked about
her walk to work. Context 164, August 2019
Supporting people with intellectual disability and autism – resisting burnout and preventing sleepwalking
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