Recasting ‘harm’ in support: Misrecognition between people with intellectual disability and paid workers

Abstract

Policy efforts addressing abuse of people with disability tend to focus on more extreme forms of violence, sometimes at the expense of attending to everyday indignities and insults experienced when receiving support. Recognition theory provides a lens for identifying actions and attitudes of misrecognition that can cause hurt, humiliation or degradation, and have a negative effect on identity formation. Honneth’s concept of misrecognition is used to analyse qualitative data from 42 pairs of young people with intellectual disability and support workers. Many of the casual interactions that signalled misrecognition highlight the everyday harms that people receiving or giving support are exposed to in their paired relationship. Systems must respond to the high likelihood of these risks of misrecognition. Supervision, training, reflective practice and support activities can expose the problems and demonstrate practices more likely to positively impact the identity formation and wellbeing for both people with disability and support workers.

Points of interest

• Everyday harms are things that happen often in services which upset people, but which do not get treated as violence or abuse. They are things like having unkind jokes made about you, being ignored, or being disrespected.

• In our project, we called this misrecognition.

• We looked at when misrecognition happened between young people with disability and their paid support workers.

• A. . . lot of the time, people did not intend to cause harm. The other person was still hurt by the things they did or said.

• We can improve the way that people with disability and support workers work together if people understand how their actions affect other people.

Keywords:

• Abuse
• violence
• young people
• support work
• NDIS
• recognition theory

Preventing violence and abuse against people with disability is now an urgent policy goal internationally (Flynn 2020; Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, 2020). However, far less attention is given to the everyday experiences of harm endured by young people with intellectual disability and their paid support workers. Gaining a deeper understanding of these experiences may shed further light on longstanding concerns about the quality of support relationships.

This article focuses on the everyday harms that take place in the lives of young people with intellectual disability who use disability services – hurt feelings and insults, omissions and silences, disrespect and diminution – experiences that are often not named or even understood as harm, but which are very much felt as such. These forms of misrecognition were identified in a recent research project about recognition in working relationships between young people with intellectual disability and their paid support workers (Robinson et al., 2021).

While these interpersonal interactions are primarily between a person and their support worker, their relationships are mediated by the organisational or institutional context which frames their work together. Recognition theory provides a helpful lens for understanding experiences of being disrespected, devalued or not cared about in support relationships and may shed further light on ways to effectively address experiences of harm that can sometimes be hidden from view.

In this article, we set up a conceptual understanding of misrecognition in paid disability support relationships. We describe the project we conducted with 42 pairs of young people with intellectual disability and support workers, and detail thematic findings about misrecognition at interpersonal and institutional levels, including the influence of social and institutional norms on the support relationships. Finally, we consider implications of the research for advancing understanding of everyday harms through the lens of misrecognition, and the implications for disability policy and practice.

Background

Policies about abuse of people with disability tend to focus on discrete incidents and more ‘extreme’ violence (Robinson and Graham 2019; Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, 2020). This sometimes occurs at the expense of attending to the everyday indignities and insults that people can experience as part of receiving support. A consistent body of evidence over the past two decades has drawn attention across several countries to the challenges for frontline staff and managers in recognising poor practice and addressing it in ways that halt the development of abusive cultures in disability services (White et al. 2003; Fyson and Patterson 2020; Robinson and Graham 2019). Alongside this, increasing attention is directed towards the impact of trauma on people with intellectual disability (McNally, Taggart, and Shevlin 2021; Kildahl et al. 2020; Keesler 2016). However, research about subtle abuses within support relationships which canvasses perspectives of both people with intellectual disability and staff remains sparse, despite the high rates of harm to people with disability from people they know (Krnjacki et al. 2016; Hughes et al., 2019, Robinson and Graham 2021; Robinson 2015).

A recent UK study by Porter, Shakespeare, and Stockl (2020) does explore the working relationships and boundaries between people with physical disability and their personal assistants in the UK, where people have the capacity to directly employ their support workers. Described evocatively as ‘the micropolitics of interpersonal cooperation’ (p.203), informality in the relationships is identified as both advantageous and a risk; and with inherent tensions due to ‘asymmetrical disclosure’ (p.203) of information between the pairs. These researchers also used a micropolitics of trouble framing to analyse these relationships, describing practical, personal and proximal relational difficulties and tensions which took place in all of the personal assistance relationships of their 30 participants at some point (Porter, Shakespeare, and Stockl 2021).

There is also a rich literature around the quality of interactions between support staff and the effect on the quality of their working relationship, which has focused on core issues of human rights. Across several studies, Antaki and colleagues have used conversational analysis to evaluate the effects of the failure to respect the choices of people with intellectual disability (Finlay, Walton, and Antaki 2008; Antaki and Kent 2012), and exclusion from interactions (Antaki 2018). In this journal, Williams, Ponting, and Ford (2009) used video analysis to highlight the positive ways that support workers sensitively used timing, humour and body language to respond to the wishes of the person they worked with in a direct employment relationship. Banks (2016) has focused on some of the inherent tensions as support workers mediate the emotional relationships of people with significant intellectual disability.

In many countries, the working relationships between people with disability and support workers are contextualised by individualised support and funding models. Fleming et al. (2019) conducted a systemic review of 73 studies of individualised funding for people with disability internationally. They found success in implementation for direct funding users is ‘supported by strong, trusting and collaborative relationships in their support network with both paid and unpaid individuals’ (p.6), because this facilitates sourcing of information, recruiting staff, building networks and support for administration and managing the funding. This review also found that relationships are strengthened by paying staff appropriately, shifting power from agencies to individuals, and avoiding paternalism.

In Australia, where our research took place, this individual funding and support approach is through the National Disability Insurance Scheme (NDIS). The NDIS is an individualised funding model which stresses the importance of the person with disability being able to choose and have some control over the kind of support they require (National Disability Strategy, 2011). Its focus on individualised support emphasises the importance of research which identifies factors that promote or inhibit positive outcomes within support relationships. Not all support provided with NDIS funding is individual, as people may choose to use their funding for grouped support for a range of reasons, including economy. Individualised funding needs to be supported by an increase in highly skilled workers to help facilitate the twin policy goals of choice and control, but concerningly the disability support workforce is increasingly characterised by high levels of casualisation, high workloads and significant skill and knowledge gaps (Cortis et al. 2013). This potentially creates an environment for harm within support relationships for both the person receiving support and the paid worker (Moskos and Isherwood 2019).

Recognition theory

Over recent years, theories of recognition have increasingly been applied in various social care research contexts to understand experiences of particular groups, including children and young people, whose lives and circumstances often position them in the social minority/margins (Turney 2012; Marshall, Winter, and Turney 2020; Paulsen and Thomas 2017; Graham et al. 2017; Robinson 2018; Häkli, Korkiamäki, and Kallio 2018). Our theoretical framework takes its lead from the core premises of Axel Honneth’s work on recognition (Honneth 1995, 2004): that recognition from others supports the development and maintenance of a person’s positive self-identity, and that this is important for her/his capacity for agency and flourishing life in the world with others. Honneth’s work conceptualises recognition as fundamental to human interaction, and individual and group identity, via three dimensions: (a) love or care, which provides the person with self-confidence; (b) respect, which supports self-respect; and (c) social esteem or appreciation for capacities, achievements and potential contribution to social and political life, engendering self-esteem (Graham, Powell, and Truscott 2016). Because of this general recognition-dependence of people to be treated in these positive ways (as an autonomous and equal person), misrecognition can result in a ‘confining or demeaning or contemptible picture of themselves’ (Taylor, 1994, p. 25) and hence do serious harm to them. Feelings like shame, humiliation, anger and indignation are important indications of where expectations of recognition have been violated. Alongside these, people may demonstrate such feelings as being unheard, ignored, unhappy, overlooked, silenced, disrespected, unsafe, or hurt. Of course, this is complex, and recognition and misrecognition can occur simultaneously.

Given our interest in formal support relationships, we have adapted Honneth’s theorising of interpersonal recognition to explore the influence of institutional context more deeply. This requires us to also acknowledge that the relationships we are studying are embedded into normative contexts defined by both institutional norms (the institutionally prescribed rights and duties of a service recipient, support worker, and so on) and informal social norms (what a person in this or that role is informally seen as having a right to expect or a duty to provide). To grasp this important aspect of the relationships we distinguish further between ‘horizontal’ recognition or misrecognition between the people (the way people care about, respect and value each other) and ‘vertical’ recognition or misrecognition between the people and the institution with its norms and expectations (the organisations appropriately recognising the individuals, and the other way around (see Ikaheimo 2015; Fisher et al. 2021). We also discuss how the relations between the people can be affected or ‘mediated’ by the explicit norms of the institution as well as by informal norms at work in the given institutional context (informally, ‘the way things are done around here’). Such dynamics potentially give rise actions or attitudes that result in experiences of misrecognition.

In this paper, we take a broad view of such misrecognition, seeking to understand the ‘other’ of recognition from the perspectives of young people with intellectual disabilities and the support workers with whom they were paired for the research. Exploring these support relationships through a recognition lens aims to identify examples of misrecognition, giving close consideration to how such experiences may be either prevented or addressed through policy and practice.

Methods

The overarching research question framing this paper is: How are experiences of misrecognition within the relationship between young people with intellectual disabilities and their paid support workers understood, and how can these be more effectively addressed? The data are drawn from a wider project about recognition in working relationships which used recognition theory to gain a deeper understanding of the interpersonal relationships between young people with intellectual disability and their paid support workers (see Robinson et al. 2021 for detail). This paper focuses on acts and attitudes of misrecognition uncovered in the study.

Research participants

A diverse sample of forty-two participant pairs were recruited to the project, comprising 23 young women and 19 young men with disability aged between 18 and 25 years and their paired support workers. All of the young people had intellectual disability, with levels of cognitive impairment ranging widely from people who needed support for all activities of daily living and communication through to people who had driving licences. Several people also had additional physical and psychosocial disabilities. The young people were paired with support workers of their choice who were employed in the programs they used. Support workers included 28 women and 14 men, ranging in aged from early 20 s to early 60 s and with varied work experience from a few months to over 20 years in the field.

Most people were paired with another person of the same gender, and had worked together for less than three years, although 15% of the pairs had worked together for over five years. The young people mostly received support in small groups (65%), and 29% had individual support. The young people were mostly involved in structured programs that focused on community participation, life skills, employment development, and respite. Many of the pairs were in contact with each outside of their programmed time together, most often at their service.

The pairs were recruited through six disability support service organisations providing a range of day and accommodation support in two states in Australia, each invited into the project in 2016/17. Half were located in urban areas, and half in regional centres. Three organisations had over one hundred participants, and three had less than one hundred. The services facilitated invitations to the young people first, and then supported them to invite the support worker of their choice to form a pair. This did not work in all cases, and for some of the pairs, a worker was allocated.

Data collection and analysis

The project data set for each pair included interviews conducted at the beginning and end of fieldwork, social maps, and photo-research. The creative emphasis in the methods aimed to provide opportunities for people with a wide range of cognitive abilities to participate (as mapping and photography minimised the need for speech) and increased interest and engagement. Our team have used these methods previously with young people with disability to canvass issues of belonging and found they supported a diverse group to contribute through multiple modes of expression (Robinson et al., 2021).

The first interview mapped the pair’s shared understanding of people, place and activities in an accessible format. In individual interviews immediately afterwards, participants reflected on their social map and provided perspectives on working together. The pairs were then supported to take photographs of their working relationships over three months and caption these, using photovoice methods to elicit data about the working relationship (Overmars-Marx, Thomese, and Moonen 2018). The pairs recorded who took the photos, and who developed the captions. In the second round of interviews, separate interviews were conducted first to capture distinctions between the pair and reasons for this, followed by joint interviews. Participants were asked to rank their photos separately and together, using the diamond ranking method (Clark 2012), according to what they represented about their working relationship, and this process was recorded as part of the interview process. Interviews ranged from 15 to 90 min, and with consent, were audio recorded and transcribed. Researcher observations were recorded systematically, which was important for capturing the observations of the dynamics in the relationships and engagement of people with little spoken language.

The data about misrecognition need to be read in the context of the wider project. Given the focus of the study was on positive elements of recognition in support relationships, no questions were directly asked of participants about misrecognition. Despite this, a rich vein of data emerged about both misrecognitive moments and more pervasive experiences of misrecognition in the relationships between young people and their support workers. The data about miscrecognition was coded to the conceptual framework against the core intersubjective recognition themes of caring about, respect and valuing. For coding, we used a broad definition of misrecognition which included detailed information about the ‘other’ of these three modes of recognition. We coded participants’ related or expressed experiences and expressions of misrecognition (what we could observe), rather than researcher assumptions about acts or attitudes that may result in misrecognition (what we might assume). Iterative categorisation was used as a systematic procedure to facilitate rigour and inclusivity in team coding (Neale 2016). All names in this paper are pseudonyms, and data has been anonymised.

Ethics and limitations

Ethics approval was obtained from the researchers’ universities. Reflection on ethical practice became an important process in the data collection because the researchers were observing good and poor quality support practice. The researchers made decisions about how to informally or formally name poor practice at the time of observations or after. Primary considerations were whether intervening in poor practice would exacerbate the harm and how to manage confidentiality. Most interventions involved modelling good practice during the research process, such as respectful interactions and valuing the young person’s participation. A few observations required more formalised intervention, either after consulting with the young person or raising the problem in a way that protected the identity of the young person or worker.

Results

The findings are organised according to the primary thematic findings about misrecognition – looking first into lack of respect, care and valuing in the ‘horizontal’ relationships between young people with disability and support workers. By coding against the recognition theory conceptual framework, misrecognition emerged where the expectations of recognition appeared to have been violated, resulting in feelings of hurt, insult, degradation, exclusion, rejection, or feeling threatened or silenced. At times, such misrecognition was less direct, such as being spoken about rather than to, being overlooked or ignored, or in experiencing low expectations. We then consider ‘vertical’ misrecognition of the young people and workers by the institution with its explicit norms and expectations, and how the latter affect their relationships, potentially hindering horizontal recognition as well. Finally, we analyse similar effects by informal norms at work in the institutional context.

Misrecognition between young people and support workers

In this study, horizontal misrecognition was evident in the ways that young people experienced disrespect by support workers; where an absence of appropriate caring about young people by support workers was demonstrated; and where young people experienced undervaluing of their contributions. These themes are discussed in turn below.

Disrespect towards young people by support workers

The experiences of intersubjective misrecognition most frequently discussed by young people related to perceived disrespect of them by support workers. This was most frequently expressed through difficulties with negotiating, lack of choice and difficulty in having a say; poor use or misuse of humour; and crossing a line between disrespect and abuse. Support workers did not discuss disrespect from young people directed towards them interpersonally to any substantial level. This is in itself a significant silence, indicative of the inherent power relations between support workers and young people.

Even in relationships where warmth and respect were high, there were instances where young people either expressed or demonstrated times when it was hard for them to negotiate. Choosing photographs to include in the final book for the project was an example where the pairs all negotiated around their preferences. It was clear that even around a staged activity, young people and support workers often had different ideas about what constituted disagreement and different levels of comfort about feeling able to refuse a request (such as to reject a particular image).

Young people spoke about lack of choice and having a say about issues such as preferred activities, support for decision-making and planning for service-related goals. Where support workers expressed disinterest in advocating for the rights or entitlements of young people in these areas, the effects on young people’s lives were clearly evident, as most young people in the project had little agency to act on their own behalf to negotiate change.

Facilitator:So what happens if you and your worker don’t agree about something; does that ever happen?

Young person:I just walk away and I say I’m sorry. I walk away, like, 20 min and I come back and I’m sorry.

Facilitator:And what does she do if you don’t agree?

Young person:I - I let her calm down first and come back.

[Kylie, young person]

The use and misuse of humour ran through the project as a strong thread. When used well, humour elevated and buoyed relationships. However, when poorly directed, humour had significant misrecognitive effect, on young people in particular. Several support workers used humour awkwardly to address sensitive topics, or subjects which made young people uncomfortable. When mis-judged, this had the effect of undermining the confidence in young people that support workers were seeking to build. For example, we observed several examples where teasing fell flat because young people didn’t understand it. When not explained or young people were not ‘brought in’ on the joke, these jokes became insults:

Good to see you’ve cleaned your act up there, Osama Bin Laden. [directed to young person who had been cleaning out the rubbish bins].

[Michelle, support worker]

This extended to grave misunderstanding by one support worker of the use of humour in support work, where his tactic of ‘giving him a taste of his own medicine’ by mimicking his way of relating to others as a demonstration of poor social skills was experienced by the young person as mocking and insulting.

This theme links to another around behaviour which skirts the line between disrespect and emotional or psychological abuse. Several examples of fundamentally disrespectful treatment to young people were observed directly by the research team, including patronising and demeaning language, infantilising treatment, and using language offensive to the young person or more widely.

we’re [referring to young person] having a little bit of a fight with our boyfriend at the moment… But we’re okay because we can do stuff by ourselves.

[Eva, support worker]

Lack of caring about

Another dimension of misrecognition in the relationships concerned lack of appropriate care from support workers to young people commensurate with their role; blurriness and confusion around interpersonal boundaries; and subsequent confusions around expectations in relationships.

Young people did not speak directly about feeling uncared for or about – and in the research process, they were not asked to comment on such a confronting topic. However, through the description of their working relationships, several young people demonstrated experiences of a lack of appropriate care from their support worker. For example, in one pair, the young person spoke about how intrusive and rapid questions from the support worker left them feeling panicked. Another worker responded to the young person’s aspirations by force-fitting them as individual goals to program activities. A third excused poor practice as a gendered approach to support work, claiming he was ‘building blokiness’ and using ‘boy banter’ to toughen the young person up.

Confusions around relationships were frequent between young people and support workers, and the cause of interpersonal misrecognition for both. Inconsistencies and blurriness around boundaries between professional and personal relationships were frequently raised by both young people and support workers. Support workers often laid down the terms of the relationships:

We have a professional relationship when either of us need to have that professional relationship, and then when it’s not, it’s a friendship. [Beverley, support worker]

This affected young people considerably more than support workers, due to the clear sense that most pairs conveyed of unequal power relations. Some young people felt confused and hurt by support workers’ statements or agreement with their suggestions that they were friends, but then there was a lack of actions that constitute friendship (such as being in contact outside of work time).

The researchers also observed times where young people did not reciprocate expressions of caring by support workers, or where they were clearly not thinking about the feelings of the workers when they spoke. Some workers spoke privately in ways that indicated they put this issue into a wider context and understood their role as facilitating activities and goals, rather than being in centrally important relationships. Others expressed some frustration about this, feeling personally upset at the lack of acknowledgement of their effort by the young person.

A small number of workers spoke in ways that indicated caring, but behaved in ways that demonstrated the opposite. For example, two workers (in different locations) made direct statements to young people expressing their personal support and commitment. One commented:

I think YP and I have had a very good beginning, and I see that that’s going to develop, and flower, and become more trustful, and things like that… I can give them honesty and trust, and a voice. [Neil, support worker]

Both workers left the job within two weeks. The young people said neither of them said goodbye.

Devaluing

Some of the young people in this study were not well-known as people, and their contributions were inadequately seen and responded to. They were conceived as clients or service users in the language and actions of the workers, and the things that made them unique people were sometimes far from view. Some support workers demonstrated this through commentary that indicated judgemental views of young people’s personal qualities, or diminished the contribution of the young person.

Some support workers expressed disparaging attitudes about the personal qualities of the young person with whom they were working, for example commenting in front of them about them (over)eating, or their perceived low standards of household cleanliness.

You’d be surprised how much Simone can eat… Yes, Simone can certainly put some food away. [Sam, support worker]

A small number of workers focused more on the contribution of their work to the young person’s family than to the young person themselves, portraying the young person as a burden. Two other workers belittled the contributions made by the young person and amplified their own contribution to successes the pair had in events and activities where skills and talents had been publicly recognised.

Several young people expressed fixed views of support workers that affected their capacity to view them as whole people. For example, several young people struggled to answer questions about the preferences and likes of their partnered support worker – a few young people commented that they had never thought about it, and it was clear that some people were not interested in the questions. One young person openly devalued the role played by their support worker.

Effect of institutional and informal norms on the relationships

The second part of the analysis was about the contribution of the institutional context to misrecognition experienced between young people and support workers. It considers the institutionally prescribed norms and expectations that constrain opportunities for interpersonal recognition. This is where two axes of recognition and misrecognition mesh: the vertical one of the young people and workers by the institution, and the horizontal recognition between them, as it is constrained or mediated by the norms and expectations of the institution.

Sometimes, acts of interpersonal recognition and misrecognition occurred between young people and support workers within situations that were institutionally misrecognitive. This made it more difficult for one or both of the pair to feel respected, cared about or valued. We also looked into how some informal norms at work in the institutional context had similar effects.

Goal-oriented policy constraining young people’s choice and agency

At the time the research took place, approaches to service provision across the six sites were changing, with much closer attention to linking activities to individual goals, but also choice of previously available group activities decreasing, and new time constraints being imposed as a result of the need for closer attention to budgets and finance in the organisations.

It was much easier for support workers to understand the institutional context in which decisions were made than for young people, and this led to a disjuncture between young people and support workers in what they considered fair and reasonable. For example, support workers in one site spoke about the need to reduce costs, and how they had needed to minimise vehicle use on non-essential trips, including lunch-time meal collections. They related this to the impacts of resourcing and wider program decisions. Several young people in this site, however, told us about the impact of the recent decision to limit the number of options available for lunch and how unfair they found it, but did not know the reasons for it. Consequently, they experienced it as misrecognition, as refusal from the workers to support them to buy their preferred lunch.

For some young people, aspirations or ambitions were interpreted by support workers and planners through an NDIS ‘goal-mindset’, regardless of its connection to their NDIS goals. One support worker spoke about massaging her invitation from the young person into the project to turn it into a goal for the young person:

So I said, “Okay. I’ll do this with you but it’s going to be a goal that we do” because as a key worker, I have to show that we’re working on goals and this is the good thing, it’s a goal for him. [Charlotte, support worker]

This filtering of aims and aspirations through the lens of NDIS goal-setting was no doubt to ensure that young people could have resources aligned to their priorities and preferences. However, it is a very distinct formalising of the way that most young people move towards preferences and aspirations in their lives. For example, one young person spoke about their enjoyment of gardening and bushwalking, which the support worker referred to as the ‘health and fitness program’. Reflecting on this, the worker commented:

I’ve probably thrown a label on it whereas she’s probably has never thought of it [like that]. [Patty, support worker]

Once locked in to NDIS plans, goals are hard to shift until the next annual plan, and given the parallel evidence about the limited effectiveness of having a say and complaint making for young people in this study, may be hard to change.

Support workers expressed a range of views about the NDIS, but their prevailing collective view was concern that large scale individualised service provision would ‘monetise’ interactions between them and young people, and put at risk the capacity for them to build relationships over time, through conversations and interactions that build trust and confidence.

When you start talking money and stuff it gets a bit awkward … that if anyone wants to do anything one-on-one when they’re in a group you then have to say "well I’ve got to charge you double for that" … it comes across that you’re not genuine. You’re only there kind of moneywise. [Damian, support worker]

Systems which limited opportunities for growth

Vertical misrecognition of young people was evident in the low expectations of them structured into their program rules around the activities they could (or could not) take on. A number of young people with employment-related goals struggled to progress because they were enrolled in community participation programs, and so not eligible for employment-related support. Some support workers endeavoured to support them within these constraints, developing opportunities within their local communities and advocating to managers on the young person’s behalf. However, they had limited success and little support, due to both structural barriers and attitudes of managers:

I think the groundwork for all that [work experience] should have been done a long time ago. I just can’t see him getting enough help from other people to keep him going that way. [Michelle, support worker]

Making effective complaints

For young people, vertical misrecognition or horizontal misrecognition mediated by the institutional norms was visible where they related making complaints which they felt were poorly received and which had little effect on improving their situation; where they had little opportunity to do things on the spur of the moment, despite having individualised funding; and where their movement and activities were constrained due to lack of resources and rigid organising frameworks.

Some young people who objected to elements of their support found it difficult to refuse it, renegotiate or complain. One young person spoke about how they hid to avoid their support worker, as they disliked the activities so strongly. Others spoke about or demonstrated related strategies of passive resistance, such as refusing to move or staying silent.

Effect of informal norms

Informal norms suggest what should (or should not) be done in particular circumstances, without being written rules of the institutions. In this case, informal social norms demonstrate a view about what people are seen as having a right to expect or a duty to provide or abstain from in a particular context – they express people’s attitudes and values in these contexts.

When support workers viewed young people predominantly as ‘clients’ or ‘service users’, a space was opened for disrespect and devaluing of young people’s aspirations and expectations. For example, many of the young people in the project had a precarious sense of privacy, and the use of space in the interviews revealed this to be well founded. While interviews were held in rooms with doors closed, in all of the sites, there were multiple interruptions, staff often knocking and immediately entering with cursory apologies, often only to researchers.

Young people in some of the sites described limited knowledge about major staff movements (like new staff starting or long-term staff leaving); program changes; as well as about daily routines. This left them feeling destabilised about their daily patterns, as the following interaction shows:

Facilitator:And how do you get home?

Interviewee:By carer. Sometimes the carer switches to… sometimes carers do one [transport] route and one do the others.

Facilitator:Oh so you don’t know who’s going to take you home.

Interviewee:No idea. It hurts a lot but I’ll deal with it.

[Scott, young person]

Some support workers spoke about feeling overwhelmed by the support needs of the young person with whom they worked, and several demonstrated a lack of skills in positive behaviour support, strengths-based support and basic counselling skills around sensitive topics.

With limited access to training and supervisory frameworks, support workers relied, sometimes heavily, on the informal norms of their organisations to shape and guide their approaches to working with young people.

I don’t know what they’re like in other places, but we at [service], we become their carers we become their friend … It’s not just a place of work, they become family and they probably always have actually. [Jo, support worker]

At times, the norms shaped poor quality support bordering on abusive or neglectful, as can be seen in this worker’s commentary on his approach to supporting a person with high communication support needs::

…they’re survivors. They know how to play the game, I can tell you. And I’m not being harsh on them, but, we – not only myself, the people I work with – a few of them – we just give them a few little guidelines…I don’t want to put a Band Aid on a little pin prick. I want them to sort it out themselves. [Samson, support worker]

Discussion

This article reports on the everyday experiences of harm endured by young people with intellectual disabilities and their paid support workers within their relationship. It seeks a deeper understanding of such experiences so these can be attended to more sensitively and effectively. Given the study utilised recognition theory to analyse the experience of both people in the relationship, within their particular institutional context of disability support, it was useful to draw attention to both the interpersonal and institutional aspects of misrecognition.

This study revealed little evidence of abuse and violence in the interpersonal relationships that would be considered reportable conduct or criminal activity. Instead, the impact from casual ‘throwaway’ comments, disregard, indifference, lack of attention and some misrecognitive acts were more frequent – particularly toward young people. Young people seemed to have a sense of the implicit conditions of recognition and, where these were violated, they expressed feelings of shame, anger and indignation. It was difficult for some people to articulate these experiences of misrecognition, and also for many staff. Recognition theory was a useful way to understand this ‘other’ of being cared about, respected and valued, both between the pairs and in relationship with their organisations. Examining data about the elements of interpersonal misrecognition (disrespect, devaluing and lack of care about) has implications for understanding impacts on positive identity formation.

In addition, our analysis found that the institutional context of relationships, including the rules and norms, affected the experience of everyday harms. Some of the rules and norms were explicit, such as activities being relabelled and having to take place within an NDIS ‘goal mindset’, constraining choice in settings of grouped service provision. Others were informal or implicit, such as not knowing who would be working with you on a given day. At worst, it seems that the institutional context, including established norms, may limit opportunities for respect and valuing of young people’s capabilities. The institutional context also at times accentuated or generated new instances of misrecognition between the people in the relationship by adversely affecting what they could do. This effect was most obvious in explicit rules, such as being precluded from employment seeking activity if enrolled in community participation programs. It was also evident in informal rules or norms, such as blurring of work and personal boundaries. The negative impact of informal norms also seemed to explain instances of misrecognition, particularly around imposing personal attitudes and values on work practice. The absence of vertical recognition also created opportunities for misrecognition through the development of informal norms, or organisational cultures, which misrecognised young people. This could be seen where, in the absence of training and supervision, staff developed their own modes of working which included mothering styles of support or under-skilled behaviour support which put people at risk.

These findings suggest that several aspects of misrecognition in disability support relationships need further exploration. Some of the attitudes and actions were about the absence or silences around recognition through caring about, respecting and valuing each other. Sometimes it was difficult to name the misrecognition, especially when there was not a specific act to point to, or when recognition and misrecognition could be occurring simultaneously. It was especially challenging for people with limited language or intellectual disability to call out these instances.

Using creative methods in the research was helpful in drawing out some of the more nuanced elements of misrecognition. Social mapping helped to explore the ways that relationships worked in practice in a concrete and understandable way, and photographs provided stimulus for people (especially the young people) to talk about parts of their relationships in new ways in the interviews.

Implications for recognition theory

The empirical findings have implications for the application of recognition theory in social care and service support settings. Analysing experiences through the lens of recognition theory (Honneth 1995) proved useful for understanding the everyday harms in these interpersonal relationships, within the institutional context of disability support. The analysis concentrated on aspects of the theory and utilized further analytical distinctions that were relevant to the aims of the project (see Ikaheimo 2015; Graham et al. 2017). Distinguishing between horizontal recognition or misrecognition between the people on the one hand, and vertical recognition or misrecognition between the people and the institution on the one hand, as well as looking at how institutional and informal norms mediate the latter, aided a more nuanced analysis of the data. While the research primarily focused on the interpersonal or horizontal aspects of recognition, the analysis of the misrecognition data revealed the role the institutional context (or vertical recognition and misrecognition) played in understanding participants’ experiences.

There may also be productive potential in pursuing a more finegrained analysis of different kinds of cases of misrecognition to better understand everyday harms. Our early analysis of this data indicates that misrecognition may take place in at least four ways:

• a simple but identifiable lack of one or the other forms of positive recognition;

• positive recognition based on misidentification of someone’s particular qualities, capacities or needs;

• simultaneous presence of some form or forms of recognition and lack of some other form or forms of recognition, which makes the misrecognition particularly subtle;

• miscommunication by either or both of the people, which may lead to misunderstanding concerning the presence or absence of some form or forms of recognition.

At this stage, it is sufficient to conclude that this research seems to demonstrate that explicit and informal norms have an effect on the experiences of misrecognition; and that misrecognition is experienced in multiple forms. Exploring the intersection between interpersonal and institutional contexts needs further empirical examination in the future.

Implications for abuse research

Our analysis showed that misrecognition was often part of people’s everyday experience. While the participants experienced this as harmful (often in terms of impacting self-esteem, self-confidence and self-respect), these acts did not attract organisational attention as abuse. This more nuanced form of harm meant that usually the young people, workers or managers did not see such experiences as abuse. Rather, they navigated these experiences in their everyday lives, perhaps uncomfortably aware they were negative, but without power or unable or unwilling to name the harm experienced in abuse terms.

Such experiences suggest the need to recast both understandings and terminology. In this research, we called these experiences everyday harms - these being common or routine experiences of harm as a result of interpersonal and/or institutional acts and attitudes. Applying the concepts of recognition and misrecognition has shed further light on a form of harm that is often so nuanced people are not alert to it.

All abuse involves misrecognition, from the everyday harms we discuss here to more explicit forms of physical and sexual abuse. Many violence, abuse, neglect and exploitation (VANE) frameworks conceptualise abuse based on discrete incidents, and downplay or ignore the everyday harms revealed in this research (Araten-Bergman and Bigby 2020; Porter, Shakespeare, and Stockl 2021). Identifying everyday harms offers an opportunity to consider practices and relationships that underpin VANE and the roles that they play, not just to focus on abuse events. For example, emotional and psychological abuse is included in many policy constructions of VANE, but is rarely articulated in detail. Where it has been researched from the perspective of people with intellectual disability, the subtle, chronic and accumulating nature of harm is emphasised (Robinson 2013). Bringing this into intersection with misrecognition to analyse how interpersonal relationships and organisational contexts influence everyday experience can help shape understanding about prevention and intervention: what constitutes a good life and quality in working relationships – not just the absence of abuse.

Applying recognition theory within, and perhaps beyond, this continuum of abuse, suggests that some forms of poor practice are borne out of people’s own experiences of misrecognition, others from their ignorance and, finally, at some are intentional and malicious. Often these acts reflect misuse of power. The potential contribution of our research is in highlighting the nuanced nature of harms in disability settings and the importance of identifying the intervention points for practice, supervision and safeguarding policy within organisations.

Implications for disability policy and practice

Building understanding of the significance of everyday harms may open new opportunities for modifying approaches to prevention, early intervention and responses. In the context of disability support, much has been vested in formalising safeguarding through the development of systems to monitor the quality of service providers and respond to experiences of violence and abuse, such as the Australian NDIS Quality and Safeguards Commission; and on policy at an organisational level to respond to VANE. This focus can be seen in the multiple inquiries across several countries, focused on high-level incidents of horrific VANE. There is a concurrent risk that this creates a vacuum about the everyday harms in support relationships. These everyday experiences may be more common in relational support settings where people do not experience mutual respect, valuing and care – horizontally through interpersonal relationships or vertically through the institution. A binary view of abuse and lack-of-abuse risks locating as benign the everyday practices of harm resulting from misrecognition, and fails to acknowledge the impact of such experiences on people’s lives.

It is important to note that in this research much of the misrecognition seemed to be unintended, either by the worker and young person or by the organisational structures. The kinds of inadvertent, misplaced, unplanned or unintentional words or acts identified in this study nevertheless open up an opportunity to reflect more critically about the subtle but potentially profound impact of misrecognition. It is an opportunity to explore whether and how policy and practice might give closer attention to the myriad ways everyday harms manifest in disability support setttings. In part, this opportunity connects to the questions above about whether the harms associated with misrecognition are part of, and also broader than VANE, and how such insights can contribute usefully to current dialogue about safety and abuse. People with disability have a central role in such a dialogue - informing the ways that services might respond through staff development, awareness raising, policy changes and appropriate other guidance or support (Richards et al. 2018).

The findings of this research might usefully inform education, guidance and frameworks that support workers and people with disability can readily understand, contribute to and engage with. For example, this may add further to a strengths-based orientation and opportunities for reflective practice and training which are flexible and responsive to the preferred ways of working of people with disability and their paired support workers (Porter, Shakespeare, and Stockl 2021; Hastings et al. 2018). More research is needed to understand the experience of such misrecognition and the institutional context in which this occurs. Such knowledge can usefully inform potential intervention points for organisations to limit and prevent instances of everyday harms within disability support contexts. However, given the extent to which we identified how difficult it was for many young people with intellectual disability in our study to call out such forms of misrecognition, close attention needs to be given to how to involve them in the development of such interventions.

The institutional context, rules and norms cannot fully prescribe what people should do within support relationships in ways that promote recognition. This preliminary analysis suggests that organisations can become aware of their potential to identify risks and opportunities for intervention through reflecting on the impact of their institutional context and the role played by both explicit and informal norms. It seems that identifying, naming and changing informal norms could be part of that process. A common example is the norm of not reacting to observed poor practice of colleagues and peers. Further research is needed about organisational responsibility when explicit or informal expectations are not met in practice.

The concept of misrecognition offers a fresh way of approaching the problem of everyday harms in support relationships. Being disrespected, devalued and not cared about are experiences that young people and support workers know and understand in the support they give and receive. Analytically applying the concepts of respecting, valuing and caring about each other is useful because these are inextricably linked with prevention efforts to address interpersonal and institutional abuse. Experiences of misrecognition are often ignored, as these fall below the threshold of reportable or actionable abuse. Yet it is the everyday insult, intended or otherwise, that people may live with for extended periods of time. Until such everyday harms of misrecognition are acknowledged as important, independently of whether they are counted as part of violence, abuse, neglect, exploitation and mistreatment frameworks, the prevention efforts will also be inadequate. Frameworks about good and poor practice need to incorporate an understanding of recognition and misrecognition in interpersonal support relationships and of how to support recognition in them.

Acknowledgements

We would like to thank the young people and support workers who contributed with insight and enthusiasm to this project. You can see their published work from the project at (www.rcypd.edu.au/projects/r/). Thank you to Amy Marshall for research assistance. In remembrance of Jaimsie Speeding, our loved and respected colleague and community researcher in the team.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was conducted through an Australian Research Council Linkage Grant (LP150100013).