Alice Schippers

Autism self-advocacy in the Netherlands: past, present and future

This article presents the results of participatory research into the roles and practices of autistic self-advocates in the Netherlands, and the outcomes of their activities. The article discusses the history of Dutch autism self-advocacy, situating it within the history and practices of self-advocacy internationally and the socio-cultural context of the Netherlands. Particular reference is made to Judi Chamberlin’s model for building effective self-advocacy organisations. Key findings include the scope of significant achievements, and the identification of barriers to efficacy in the areas of governance, personal and organisational capacity, relationships with other organisations, and coalition-building. The research concludes by considering what practices could serve to build increased capacity and efficacy, based on the experiences of these and other self-advocates.

Special issue: Quality of life and family quality of life: Recent developments in research and application

Special issue: Quality of life and family quality of life: Recent developments in research and application Roy I. Brown & Alice Schippers To cite this article: Roy I. Brown & Alice Schippers (2016) Special issue: Quality of life and family quality of life: Recent developments in research and application, Journal of Intellectual & Developmental Disability, 41:4, 277-278, DOI: 10.3109/13668250.2016.1234958 To link to this article: http://dx.doi.org/10.3109/13668250.2016.1234958

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

Abstract This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Personalization, self-advocacy and inclusion: An evaluation of parent-initiated supported living schemes for people with intellectual and developmental disabilities in the Netherlands

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants’ personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building.

Quality of life for young adults with intellectual disability following individualised support: Individual and family responses†

ABSTRACT Background In this study we evaluated the long-term impact of a project in which families were individually supported in the realisation of personal future plans in the city of Almere, the Netherlands (2004–2006). Method We used fourth-generation evaluation principles. Data collection consisted of semistructured interviews with family members and adults with intellectual disability as well as focus groups with both groups. Photovoice was used as a strategy to engage 4 young adults with Down syndrome in the research. The results of the photovoice were presented to the community at a town hall meeting. The data were coded and common themes were created. Results The majority of the participants evaluated the project as having a positive impact on their quality of life. Conclusions The results of the study support individual future planning for young adults with intellectual disability and their families in the transition to adulthood.