Co-designed research explores how to recognise and manage everyday harm in paid support relationships.
A UNSW and Flinders University research partnership asks what can be done when young people with cognitive disability experience harm in their everyday relationships with paid support workers.
This occurs when people with disability are treated as less important or less valuable than other people, says Professor Karen Fisher from the UNSW Social Policy Research Centre.
“These situations cause people to feel humiliated, silenced or offended, for example, when they’re ignored or spoken to in a nasty way. We call this everyday harm.”
Prof. Fisher is a Chief Investigator alongside lead Chief Investigator Professor Sally Robinson from Flinders University and Dr Heikki Ikäheimo from UNSW’s School of Humanities & Languages.
The project asks how policies and culture within disability support services – the “rules and vibes” as its community researchers call this – can support better working relationships.
UNSW and Flinders University are collaborating on the research with industry partners: the NDIS Quality and Safeguards Commission, VACRO, Purple Orange, Northcott, SA Department of Human Services, Bedford, Mable, Disability Advocacy Network Australia (DANA), Novita, and GenU.
The project’s disability inclusive research model recognises the lived expertise of four community researchers with disability: Hannah Zsigoszki and Tyra Buteux (Northcott Disability Services) and Ruby Nankivell and Rachel High (Flinders University).
Everyday harm can occur through actions and inactions, both intentional and unintentional, often as part of common practice or culture. Ms Nankivell described its effect as when you don’t “feel right in your head, heart or gut”.
While everyday harms are addressed in some service policies, the definitions are not always clear, Prof. Fisher says. “These seemingly small incidents are not within the definition of a reportable incident,” the expert in disability and mental health policy says.
“Yet their frequency, their pervasiveness, has damaging cumulative impact on people’s quality of life. Understanding everyday harm enables organisations and support workers to notice it, support people when they experience it, and change practices to prevent it.”
The study, funded by an Australian Research Council (ARC) Linkage grant, interviewed 36 pairs of young people (aged 18-31 years) and their support workers using pictorial mapping, a method that uses illustrations, symbols and words to explore ideas and experiences.
The interviews focused on how participants worked well together. This focus was to avoid causing additional harm. Within this focus, people spoke about when things did not go well, how they managed difficult conversations, or talked about change in a safe way. The team also interviewed organisational managers and board members.
The research team identified six types of everyday harm: to emotions (hurt feelings); mental health; physical health; growth and learning; relationships; and reputation. The typology promotes nuanced responses, expectations and restorative practices, Prof. Fisher says.
“The focus is on the person’s experience of harm, its consequence, irrespective of the intentionality and conflicting interpretations of the actions or inactions that caused it.
“It provides a non-judgemental and hopefully fruitful way to facilitate open discussion of everyday harm – to acknowledge, respond to and repair it – at both interpersonal and organisational levels in disability support services.”
The subtle – at times habitual – nature of everyday harm means it often goes unacknowledged, and people often do not have ways to express what has happened, Prof. Fisher says.
One person with disability described it: “I’ve had all that before too, been ignored or in trying to answer a question, they think you answered a wrong answer and they kind of like laugh at you or something. Think it’s a silly thing or something.
“Or if you walk into a room and everyone talks and then suddenly you walk in and everyone goes quiet. I’ve had all that been done to me. It’s like bullying, like teasing you … Yeah, but I don’t know the name, what it’s called.”
While people know they need to address this frequent type of harm, effecting change is difficult, Prof. Fisher says. “For this reason, we really felt we needed a good, strong theoretical base to investigate and understand everyday harm, because understanding is the first step in fixing it.”
The interdisciplinary research draws on recognition theory, a philosophical framework for understanding human relations. Feeling valued, respected and cared about are different but connected aspects of recognition, says Dr Heikki Ikäheimo.
“Everyone knows from personal experience how good receiving adequate recognition from other people is, and how painful it is to be left without it – misrecognition,” the philosopher and expert on recognition theory says.
The team mirrored its principles for positive relations within their own practice. Photo: Supplied.
“We expect others to value and respect our presence in the social space we inhabit with them, we expect recognition for our achievements or contributions, and we expect that our rights are duly recognised.
“Humans are relational beings that necessarily depend on each other in various ways. The quality of that relation is crucially important, both for our personal wellbeing, personal development and personhood more generally, and for a successful and harmonious social life.”
Experiences of interpersonal misrecognition in support relationships can negatively and cumulatively impact on people’s identity – their self-confidence, self-respect and self-esteem – and their relationships.
One person with disability discussed being the target of a cruel joke that was taken too far: “[The support worker] had quite a strong personality, like it was a bit hard to speak up to her, and … she would say things like 'I'm the golden child' meaning my mum liked her more than even me and my brother.
“And I don't have the best relationship with my mum, so that was hard to hear, my mum did like her quite a lot.”
The research focus on interpersonal recognition provided “conceptual clarity” and a necessary shared vocabulary to consider how harm occurs and what response might enhance mutual recognition.
The team mirrored these principles for positive relations – value, respect and care – within their own practice as well as in their recommendations.
“People with disability understand the idea of everyday harm. They want the words, the examples, to be able to name the experience of feeling uncomfortable or dismissed, for example,” Prof. Fisher says.
“That naming … helps with feeling validated, so you can say, ‘That was wrong. I don't have to feel that way. I don’t have to live with everyday harm. I can prevent it. I can speak up.’”
Recognition theory also enabled the team to better understand how interpersonal relationships and organisational contexts interrelate and influence everyday harm.
“Recognition theory considers how we behave in interpersonal relationships; how our behaviour is influenced by our roles; and how it is further shaped by institutional rules or policies and cultures of expectations,” Dr Ikäheimo says.
Restrictive practices can make everyday harm more likely. For example, one person described feeling distressed by being required to independently complete a safety procedure they could not perform, even though support staff were available and could have assisted.
Several people talked about the effects of poor communication, combined with high staff turnover. Uncertainty about change affected people’s everyday lives and made it hard for them to plan and feel comfortable, the research found.
The project was codesigned through in-person and online workshops with the community researchers, partners and academics as well as advocates and government personnel. The workshops built on the team’s scoping review of policy to inform the fieldwork and interview questions.
The research team is developing resources for disability service organisations with a focus on Easy Read versions and videos to promote accessibility.
Hannah Zsigoszki and Tyra Buteux have also developed The Everyday Café, a short roleplay that translates the research for disability service audiences. The Everyday Café explores everyday harm in a café environment.
In the scenario, the person with disability drops their coins and the customer in the queue behind them is rude. The situation is exacerbated when the barista gets upset.
The community researchers presented the Everyday Café at Northcott Disability Service, providing a “fixing” version – someone helps to pick up the coins, the barista apologises and someone helps the person sit down – to demonstrate the positive impact of recognition.
Having the tools to prevent and address everyday harm in support relationships is essential to ensure the safety and wellbeing of people with disability, Prof. Fisher says. “By fostering mutual recognition, we promote a more inclusive society that affords people with disability the care, respect and appreciation they deserve.”
School of Humanities & Languages | Social Policy Research Centre
Professor Karen Fisher | Dr Heikki Ikäheimo
Pillar 7: Advance economic and social prosperity
