Title:

Influence and Participation for Young Adults who have Intellectual Disabilities in the Social Arenas and Democratic Processes of the Local Community.
A participant-based action research study.

To achieve citizenship, all citizens need to be able to make their voices heard. Policy and practice in the welfare society stress that all citizens should be included, but in reality, people who have intellectual disabilities are often excluded.
The overall purpose of the thesis was to study how young adults with intellectual disabilities experienced to have influence and participation in the local community and what experiences and processes that arose through the creation of a social arena in the form of influence cafés.
The research aimed to study how the implementation of an organized meeting place on three occasions (influence cafés) was experienced in terms of having influence for young adults with intellectual disabilities and how participation in a municipality's leisure activities, cultural activities, and democratic processes was experienced by young adults who have an intellectual disability.
The study was conducted as participatory action research together with seven co-researchers who all were young adults with intellectual disabilities. The empirical data was collected in one Swedish municipality. The data constituted of that seven co-researchers took part in two single interviews, three focus groups interviews, and three actions. The staff from the municipality took part in a focus group interview and a survey. In order to support dialogues with the co-researchers, the method Talking Mats was used during the single interviews, and during the focus groups interviews photographs were used. All interviews were analyzed using thematic analysis. In order to process data and gain insight into data, the data material was coded in Nvivo.
The theoretical starting points for the dissertation were theories of citizenship, participation, and situated learning with sub-theories. The theory about citizenship addresses issues related to the theory of normalization and exclusion, capability, and empowerment. The theory about participation concern sub-theories as Arnstein's ladder of citizen participation and intersectionality. The theory about situated learning addresses how joint learning takes place in the implementation of the influence café method.
The results showed that the young adults with intellectual disabilities experienced exclusion in culture, democracy, and leisure activities. The results showed that the young adults with intellectual disabilities had difficulties being able to participate and to be able to gain influence as citizens. The results also showed that when staff from the municipality was given a method and
the opportunity to reflect on involving young adults with ID in decision making, a change of their attitudes towards a more inclusive direction was achieved.
Conclusively, when young adults with ID are allowed to express their thoughts, they can have a significant impact on the organization of a municipality’s culture, leisure, and democracy activities. Together, staff and young adults with ID can create a significant change in society and take it in a more inclusive direction for all citizens.
Keywords: Intellectual disability, young adults, participatory action research, citizenship, participation, situated learning

A selection from Stockholm University publication database

• Influence and participation in leisure - and democratic activities for people with intellectual disability

  2019. Jenny Rosendahl, Mara Westling Allodi, Jenny Wilder. Book of Abstracts

  Conference

  An participatory action research study together with seven young adults with ID. The purpose of the study was to examine how to involve and increase influence and participation for persons with ID in a Swedish municipality.

  Read more about Influence and participation in leisure - and democratic activities for people with intellectual disability

• Play for Children with Disabilities

  2019. Mara Westling Allodi (et al.). Users' Needs Report on Play for Children with Disabilities, 104-116

  Chapter

  The aim of this study is twofold: firstly the aim is to give a short description of the policy context of Sweden, which is relevant for the topic of “Play for children with disabilities”, through a presentation of the legislation and the policies of stakeholders, the national and local agencies and authorities with responsibilities in this field, and of other non-governmental organizations. Secondly, the aim is to perform a mapping of the users’ needs concerning play for children with disabilities, which are emerging from available research from relevant disciplines, reports and investigations made from the authorities and organizations that have responsibilities in this field, and other relevant stakeholders in Sweden. The content of the mapping effectuated are the users’ needs, the barriers and the facilitators that are described in the identified reports.

  Read more about Play for Children with Disabilities

• Who is the expert? Ethical issues in participatory action research together with young adults with intellectual disability

  2019. Jenny Rosendahl, Mara Westling Allodi, Jenny Wilder.

  Conference

  Read more about Who is the expert? Ethical issues in participatory action research together with young adults with intellectual disability

• ”They just listen but not well enough”

  2021. Jenny Rosendahl, Mara Westling Allodi, Jenny Wilder. JARID : Journal of applied research in intellectual disabilities 34 (5), 1290-1291

  Article

  Background: The aim of this research was to increase the influence and participation in the society for young people with intellectual disabilities.

  Method: Participatory action research together with young adults with ID as co-researchers. An action was added to try to find a method to let young people with ID affect and develop municipal leisure, culture and democratic activities.  The co-researchers took part in two single interviews, three focus group interviews and three actions. Staff from the municipality took part in a focus group. A survey was answered by the municipal management. 

  Results: The research team found adjustments for better adaptation of municipal activities. The co-researchers instructed staff from the municipality to become better in listen to young people with ID, and thereby has staff in the municipality gained increased knowledge about treatment and inclusion of young people with ID. Young people with ID received a higher level of influence and participation in the municipality.

  Conclusion: If staff in the municipality get opportunity to learn to meet and listen to young people with ID, young people with ID can contribute to the development of society in a more inclusive way. When young people with ID teach staff, better working methods and municipal activities for young people with ID materializes.

  Read more about ”They just listen but not well enough”

• Inflytande och delaktighet för unga vuxna som har intellektuell funktionsnedsättning: - i lokalsamhällets sociala arenor och demokratiska processer

  2022. Jenny Rosendahl.

  Thesis (Doc)

  To achieve citizenship, all citizens need to be able to make their voices heard. Policy and practice in the welfare society stress that all citizens should be included, but in reality, young adults who have intellectual disabilities (ID) are often excluded. The overall aim of the thesis was to study how young adults who have ID acquired citizenship. The specific aims were also to study how young adults who have ID experienced influence and participation in a municipality's leisure activities, cultural activities, and democratic processes. 

  The theories used were theories of citizenship, participation, and situated learning. 

  The study was conducted as participatory action research by seven co-researchers and staff. The action Influence Café was organized as a meeting place on three occasions. To support dialogues with the co-researchers, the method Talking Mats was used during the individual interviews, while during the focus group interviews, photographs were used. The co-researchers were seven young adults aged between 16 to 30 years of age who have ID. Five staff from the municipal organization constituted a project group. The co-researchers took part in two single interviews each, three focus group interviews, and three actions. The staff from the municipality took part in a focus group interview and a survey. Field notes were taken during the action process. 

  The results showed that young adults who have ID experienced exclusion in leisure, culture, and democracy activities and had difficulties gaining influence as citizens. When staff from the municipality were given a method and the opportunity to reflect on involving young adults who have ID in decision making, a change in their attitudes towards a more inclusive direction could be achieved. Conversely, when young adults who have ID were allowed to express their thoughts, they experienced a sense of impact on the organization in the municipality. The results indicate that a shift needs to take place, away from the lack of knowledge and abilities of young adults who have ID, towards the knowledge deficits and normative beliefs of those around them. A conclusion that can be drawn from the study is that empowerment and the ability to influence society can be created if young adults who have ID are made visible and begin to be seen as a resource; and thereby they can be allowed to take their place as citizens.

  Young adults who have ID can participate as co-researchers if the right adaptations are made. To enable influence and participation for young adults who have ID in leisure, cultural, and democracy activities, staff need to have knowledge about prevailing norms, ID, and how an adaptation of activities can take place. The Influence Café method can contribute to increased influence and increased participation in municipal activities for young adults who have ID. The Talking Mats can be used as a method for interviews, but adaptations of the method need to be made based on the design of the study. In future research, more studies need to be based on the theory of situated learning where young adults who have an ID get the opportunity to cooperate with staff in focus on adaptation and knowledge building. 

  Read more about Inflytande och delaktighet för unga vuxna som har intellektuell funktionsnedsättning

Show all publications by Jenny Rosendahl at Stockholm University