‘This group helps me to keep going’
People with learning disabilities are among the most ignored in our society. They are six times more likely to die from coronavirus than members of the general population, and Black and Asian learning impaired people are even more at risk (Public Health England, 2020). Until the public outcry earlier this year, the learning disabled had been quietly but systematically relegated from Covid-19 vaccine priority lists in many parts of the UK (Scown, 2020). In the second wave of the Covid-19 emergency they have met with shocking discrimination in their treatment by emergency medical services (Trapper, 2021).
Indeed, the pandemic has revealed the deep inequalities and fractures in our society (Scambler, 2021) – a society which tolerates a 24-year gap in average life expectancy between people with learning disabilities and the general population. That’s a dividend of decades-long failures in routine health treatment and above all, in monitoring and prevention (Public Health England, 2020). Bleak trends like these suggest that the eugenicist ‘common sense’ that spawned the brutal mistreatment (at worst, the murder) of people with disabilities and from ‘minority ethnic’ groups in the preceding century has not altogether disappeared (Friedlander, 1995; Mishra, 2020; Wolfensberger, 1991).
In troubled times, solidarity has to be worked at, and it’s in this context that we would like to share our experiences with MELD – a community-psychology informed group for men with learning disabilities in Telford and Shropshire.
Founded in 2006 by one of the authors and a small steering group of service users, the MELD grew from shared personal knowledge, clinical experience and research: men with intellectual impairments often struggle with social isolation, loneliness, and with unique barriers to acceptance and participation within their own communities (Emerson & Roulestone, 2014; Marcus, 2009).
The acronym MELD stands broadly for men with learning disabilities, but the letter ‘E’ has adopted several meanings over the years – ‘Encouragement’, ‘Enthusiasm’, ‘Energy’, ‘E’s OK’ and, of course, ‘Empowerment’, with the latter often as an aspiration more than a reality (see Epstein, 2015; Wolfensberger, 1991). The group blends a seriousness of purpose with togetherness and good humour. It enables its participants to diagnose an often socially toxic but all too real world, rather than themselves, as the main source of their problems (Kagan et al., 2020; Holmes, 2010; Smail, 2005).
In monthly meetings held in a public library, the dozen men in the group have served as consultants to the local authority and to academics researching the lives and aspirations of people with disabilities. They have worked with schools and police on anti-bullying campaigns and the promotion of a ‘safe haven’ scheme for vulnerable people.
With the first national lockdown in March 2020, MELD came to an abrupt halt: just when it was needed most.
If ordinary human contact is the lifeblood of wellbeing (Holt-Lunstadt et al., 2015; Marmot, 2018), then for many of those with a learning disability, this sudden quietus came at incalculable personal cost. For many, the withering of organised activities and routines meant loss of friendships and of most social encounters (Shakespeare et al., 2021).
This was true even within the widely used supported living schemes for people with disabilities, where convivial shared kitchens and lounges became off limits or turned into solitary, functional spaces. Paid carers underwent a disturbing transformation, their faces and their emotional warmth stifled behind PPE masks and the interdiction upon comforting touch (Cowley, 2020). Families, especially the most impoverished and overcrowded of households, suffered rising mutual tensions and frustrations. All too often this manifested in bouts of challenging behaviour and serious mental health problems (Harris, 2020; Shakespeare et al., 2021; Wilner et al., 2020).
In circumstances such as these, anything that could be done to help people with learning disabilities to keep in touch with one another might be of value. Whilst an online version of MELD was imaginable, an intractable world posed many obstacles...
All too often, however, media like phones and Zoom constitute a remote universe for people with learning disabilities. This was especially true for those with Autism diagnoses and communication difficulties, who struggled to read facial expressions in three-dimensional daily life, or who were intimidated by the many glitches that go with videoconferencing, or by the thought of being watched up-close through a camera (see Sparrow, 2020; Zolyomi et al., 2019). Others could afford neither the internet connection, the online hardware, nor the practical support to help them use it. Some – but more often their carers – worried about the hazards of the internet.
In these and in many other struggles, the men in the group were only too representative of people with learning impairments in the UK (Power, 2013; Whittuck, 2016). Indeed, the first online sessions of MELD were viable only for the one participant who could use a smartphone, and for the pair who could borrow a device and the carer time to enable them to engage with it.
As the first national lockdown restrictions were eased in the summer of 2020, the library that normally hosted the MELD agreed to allow us to reinstate face-to-face meetings for up to six people – half of the total membership. This presented a chance to recreate a semblance of the group: uniting those who were able to meet online with some of those who were not.
We gathered the face-to-face participants in the biggest and best ventilated room with a large screen to accommodate a virtual meeting with the others. The outsize images on the screen made the facial expressions and gestures of the online participants more discernible for those in the library. A webcam gave a broad view of the room and its occupants from a tolerable five metre distance; this way, the more wary amongst the face-to-face participants would feel less under surveillance. It was our hope that, over the course of several sessions, participation in this face-to-face contingent might become a stepping stone toward eventual online access from home, should the lockdown resume.
We managed to organise three of these ‘hybrid’ virtual and face-to-face gatherings with attendance levels fluctuating around four people per session. Not as high as we had hoped, but better than for other support and activist groups within the Adult Learning Disabilities service, whose members quickly gave up on the virtual incarnation.
In the hybrid MELD, especially, talk was sustained if not always smooth, and there were moments of sensitivity and delicacy. It helped that most knew each other and the facilitators well, and could draw upon group traditions, and their long familiarity with the shape and rhythms of the physical meetings. Unsurprisingly, everyone noted how these gatherings created emotional buoyancy and dispelled loneliness, sometimes for days after the encounter. For one man, the hybrid version created a bridge toward his eventual participation fully online: something that, before his work within these mixed meetings, he was adamant he would never do. Another participant travelled many miles to regularly join the library-based component. However, he withdrew completely from virtual contact as soon as the hybrid forum came to an end with the next lockdown.
What made the video-hybrid meetings a success?
Context and practice give words their sense. To gain psychological insight into the apparent popularity and success of the hybrid group, it seems helpful to turn to dialogical and process views of human interaction, which assume that we are always in a two-way relationship with our surroundings. Our conduct is influenced only partially by our intentions and decisions, which are themselves embedded within the situations that – frequently unnoticed – shape so much of what we feel, say and do (Billig, 2016; Cromby, 2015; Shotter, 2016, 2003).
The hybrid group, in its ‘three-dimensional’ aspect and in its bringing together of several participants in one room, was an attempt to foster and harness these elements for men who – in any other attainable circumstance – could not comfortably orient themselves in a flat two-dimensional online world. The physical presence of the other participants in the room seemed to help those on both sides of the camera lens to make more sense of and to draw more actively upon the shared movements, gestures and facial expressions that guide conversation: rooted in the body as ‘a spontaneity which teaches me what I could not know in any other way except through it” (Merleau-Ponty, 1964, p.93; and see Bhaktin, 1993; Fuchs, 2017; Shotter, 2016).
What have we learned?
Some things never seem to change… four months after the first online gathering of the MELD, two of the participants were still embroiled in local authority eligibility assessments intended to fund their inclusion. This tardiness seemed to mirror the lack of public resources – including meaningful advocacy – and the wide gaps between the priorities of care providers, funding agencies and of the service users themselves.
But some things do. With some justification, the internet is often seen as more of a threat than a resource for vulnerable adults (Holmes & O’Loughlin, 2012). Yet with a little thoughtful planning, a ‘hybrid’ online and face-to-face community group has brought modest but tangible benefits in wellbeing and participation during lockdown. As one man put it, ‘this group helps to keep me going’, and one of the more sympathetic carers echoed that ‘the need to keep in touch like this has never been greater’.
There were also some signs that such meetings can help people who normally dislike video gatherings to feel more at home in them and in the online environment which, for better or worse, is becoming a prerequisite of civic life – including NHS health consultation (Bridle, 2018; Walker, 2020). Modest steps within a world so often stacked against people with learning disabilities – but pointing, perhaps, in a helpful direction.
- Paul Moloney is a Counselling Psychologist, Shropshire and Telford Adult Learning Disabilities Team. Email: [email protected]
- Dr David Dobel-Ober is Evaluation Lead, Research & Innovation, Midlands Partnership FT. Email: [email protected]
- Sarah Millichap is an Assistant Psychologist, Shropshire and Telford Adult Learning Disabilities Team. Email: [email protected]
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