Jonkoping is a municipality in southern Sweden on the edge of Lake Vättern. Officials and social services workers in the area wanted to gather user perspectives to give citizens a voice as they work towards improving social services.This feature articles brings the stories from different service users, including asylum seekers and autistic people, and from staff together in order to understand and amplify their experiences of life in Sweden and how the support that they receive from social services can make their lives easier or more difficult.
The stories were gathered as part of the CoSIE project - a pan-European scheme looking at the co-creation of public services - and this feature article organises the findings from the stories into four broad sections. The first looks at the way in which users and staff describe their role in the national and local society and the extent to which they feel accepted in society. The second looks at positive stories where individuals feel they have control over their own lives, and the role that positive interactions with social services have to play in this. The third examines stories that are less positive - where individuals describe the struggles they face in their daily lives. Finally, the role of the services is explored, and the stories of the staff and users contribute to build up a picture of the strengths and weaknesses of the service, and where improvements might be made.
Feeling accepted in society: hopes, expectations and realities of life in Sweden
Many of the stories were about individuals wanting to feel in control of their daily life and feel accepted by the society in which they live. This was true of both people with disabilities and asylum seekers.
One young male asylum seeker discussed having to flee his home country because of war, saying that he and his family were “looking for a life in peace” and where they could be a “normal family”. He speaks positively of his experiences of life in Sweden, and says that coming here was better than he expected. He misses things that he had at home - his family apartment, his dad’s car, his school, and his friends - but finds that there are many more opportunities for him in Sweden. He has big dreams for the future, of studying, helping others and of being a good person. Another asylum seeker also describes the “new expectations and possibilities” of his life in Sweden. He wants to feel accepted by his new community, and also makes a plea for his peers “to be met with acceptance and compassion”. The positivity he feels about life in Sweden is emphasised by his wish that as many people like him as possible are given the same opportunity to build a life here.
But, as some of the stories show, building a new life in a new country is not easy. One asylum seeker escaped his home and sent his family away to safety, but now has a 5-year-old son that he has never met. He describes being haunted by “nightmares” and he does not feel as free as he expected. His wish is to be reunited with his family so that they can all have a better life together. Another man confesses that moving to Sweden “did not turn out as [he had] hoped”. His asylum application has been rejected and he knows that soon he will have to return to Afghanistan, a thought that makes him afraid. Another asylum seeker asked for greater support from services for those who are new to Sweden. Awareness of both the past trauma and the on-going mental anguish that accompanies the uncertainty of an asylum seeker’s situation is therefore paramount for services to be able to provide effective and approachable support. There are parallels between these stories and those collected by and from asylum seekers in the UK in conjunction with NACCOM.
Control and influence over daily life
With many service users encountering challenges that affect their day-to-day quality of life and interaction with society, one thematic thread that emerged from the stories was the ways in which people worked to maintain control of their lives and how they find positives in their situation. These viewpoints extend the idea above of users wanting to be treated as capable and autonomous individuals. One autistic service user and volunteer describes how he uses television and meditation as a way to calm his mind from the effects of his autism. Another man talks about how he likes to go on trips and discusses the “joy and meaning” that they give to him, enhancing his world with “an understanding of everyday life”. One 10-year-old boy enthusiastically advocates that it is “really good” to live with autism, because “you remember fun stuff, autism is a little bit smart, you know!” He loves to play Lego and computer games. These stories provide a counter to negative stereotypes about autistic people and demonstrate models of coping strategies that service providers can support and promote.
Some of these stories reveal the ways in which social services support users to help them maintain control in their lives, which in turn leads to them viewing the interventions in a positive light. One woman who lives in a group home talks about the support that she receives from the staff where she lives. She values care, trust, curiosity and balance in her support, and welcomes the fact that staff in her home are curious and empathetic and ask her how she feels. The positive impact on this user cannot be overstated though, as she herself believes “it might save my life, living here”.
Lack of control and influence over daily life
In contrast, some of the stories gathered give an insight into the lived experiences of people who feel that they have little or no control over their lives. Feelings of powerlessness, uncertainty, insecurity, being out of control and overwhelmed were common to the experiences of both asylum seekers and autistic people. One asylum seeker talks about “feeling powerless” with his “fate in the hands of the authorities” as to whether he can stay in Sweden. He has been told he will have to return to Afghanistan soon and this makes him fear having no family and fear for his life, but he has no say in his situation. Another asylum seeker feels he is “running out of hope” and uses his story to plead with the authorities to put themselves in his shoes before making a decision. Once again, empathy emerges as a key value that individuals seek and have a right to expect from the services supporting them.
For autistic people too, navigating a world designed by and for neurotypicals can lead to similar feelings of being overwhelmed, isolated and unsafe. One man describes his “invisible disability”, Asperger’s syndrome. The man describes the impact that this has on him, making him “very tired” and how visual and audio stimulations “drain [his] brain”. He confesses that he feels he can’t compete with people who don’t have this disability, but asks for “understanding, not pity”. Again, this is another marker to service staff as to how users want to be viewed and supported, while also offering insight into how to make services and encounters with services less onerous on autistic people.
One 10-year-old boy discussed how feelings of anger and sadness can lead to accidents, when his autism makes things hard for him. Again, he points to some of his triggers, which include food mixing on the plate. One mother of an autistic child describes how her child “wants friends” and “contact with others” but struggles to make those connections. She would like support in finding other children with autism who can understand and empathise with her son, and become friends with him, highlighting the importance of peer support in a social services setting.
Feelings of being out of control were often reported in conjunction with negative experiences of services. Issues around housing support services were mentioned in two stories.One woman describes feeling “bossed around” by the housing support services, eventually leading to her turning down support from them. This story demonstrates how the ways in which services interact with users can compound their existing feelings of powerlessness, and render the services ineffective as they fail to help those that they are supposed to support.
Role of services
The learning points from the stories above about what users require from services and the type of relationships they wish to have with staff can be placed into further context by exploring what stories service providers themselves told about their perception of their role. “The relationship between staff and service users is key”, says one worker for the social services. Another discusses how staff “must be interested in meeting new people” when they work with people with disabilities. Another story expands on the relationship between staff and service users, emphasising the importance of society seeing people with disabilities as equals and being aware of the contribution that they can make. All of these reflections frame interpersonal relationships as being at the centre of successful services, echoing calls by service users for interactions based on values of trust, equality and empathy. One approach that is proposed by a service worker is for support to be given “starting with the needs of the individuals”. This offers a way of building the types of relationship described above, and the staff member suggests that the co-creation process is one way to achieve this, but that it requires “time and space” to do so. The stories also show that the Jonkoping services have already started to demonstrate good practice in this area, for example the story of an autistic man who volunteers two hours a week with the service to act as a “connector” between staff and service users, thus embedding user voice within the operating structure of the services and potentially breaking down barriers to access as individuals may feel more comfortable speaking initially to someone who is “like them” when they first engage with social services.
Staff also discussed in their stories their positive feelings about their jobs, role and wider lives. One staff member described how his work “feels important”, “meaningful” and gives “energy” to his everyday life, but also that he values having a “balance between work and spare time”. He finds having his family and friends to talk to an important source of support, describing them as a “safety net”. Another discussed the “feeling of improving someone’s everyday life” that offers him job satisfaction when things go well. It is clear that workers see their job as valuable and that it enhances their sense of self-worth, especially when they feel like they are making a positive difference. It is this type of motivation that needs to be understood, harnessed and supported when taking staff through the challenging process of making changes and improvements to the service, as well as supporting the wellbeing of staff by ensuring a continued work/life balance.
All people who use social services are individuals with their own stories to tell and their own set of needs. However, across the two cohorts involved in this pilot study, there were some common trends. Both asylum seekers and autistic service users were looking to feel in control of their lives, to be accepted by society, and to be treated with respect and empathy by social services staff. Both groups were able to point to examples of where service provision had been supportive, confidence-building, empathetic and motivating, offering them opportunities that they might not otherwise have experienced and preventing their circumstances from damaging their lives. However, several users also told stories of where they had not been provided with the required support, and indeed where the delivery of services had been undertaken in such a way as to make them feel undermined, bullied and disempowered. A sense of powerlessness was one of the strongest emotional indicators described by members of both groups. Being in a state of disadvantage places users in a potentially extremely vulnerable position, and the findings in this pilot suggest that supporting users to feel empowered and to have a say over their lives and support could hold the key to making encounters with social services have a transformative impact. One way in which to achieve this is to look for ways in which to make user-voice and impact feature much more strongly in the way services are created and delivered.