Co‐designing the Cabriotraining : a training for transdisciplinary teams

Accessible summary The research was conducted by a team of researchers. Some of the researchers have experience of living with a disability. The researchers created training for other research teams that include experts by experience. The training has six parts. To decide what happened in the training, the researchers read articles and asked the research teams they trained about what problems they had and what they wanted to know about. The article tells why and how the training was made. It also says what training is needed for researchers with and without disabilities to learn and work together in a way that feels safe and useful. In developing and providing the training, it was very crucial to search for a safe and welcome space for all people involved (Figure 8). As we don't know what is "safe" for the other, this means we have to search together, in respect and with enough time to get to know each other. Background Researchers collected questions and needs for training from 10 inclusive research projects in the Netherlands. Based on literature research and the information collected, six training modules were developed. Researchers sought to learn how to develop and provide training and coaching to inclusive teams on organising collaboration in the different stages of their research projects. Method An iterative training development process to support inclusive research projects was initiated by a research duo backed by a transdisciplinary team including researchers, trainers and designers. Some members of the team have experiential knowledge based on living with a disability. Results Literature research resulted in four guiding theories, including Universal Design for Learning, Derrida's concept of Hospitality, post-materialist theory looking at agency as an assemblage, and Romiszowski's model situated within Instructional Design theory. Insights gained during development of the training modules are documented with text, figures and vignettes. A core finding was the need to add "Level Zero" to Romiszowski's model: a collective term created for all the interacting issues trainers had to consider because of research group diversity. Conclusions Hospitality formed the heart of "Level Zero." Creating a failure-free space for learning is an important pre-condition for the development and organisation of training. Training can inspire exploration and reflection on collaboration and can illuminate how to conduct research within transdisciplinary teams. Essential practices included working with nonverbal research methods, as these are (more) fit for purpose when including the knowledge of experts by experience and incorporating practice- and stakeholder-based knowledge

Adults with intellectual disability : choice and control in the context of family

This chapter about the experience of choice and control by adults with intellectual disability in the family context is offered against the background of the tripartite ecological theory of self-determination (Abery and Stancliffe, A tripartite-ecological theory of self-determination. In Wehmeyer et al. (Eds.), Theory in self-determination: Foundations for educational practice (pp. 43–78). Springfield, IL: Charles C. Thomas, 2003). The challenges in determining readiness for adult decision-making are discussed, as are the experiences of adults with intellectual disability when exercising choice and control within the family context. How families, including parents and siblings, influence decision-making by their family member with intellectual disability is summarized. The critical role of the family in supporting independent choice-making is also highlighted. The chapter ends with a call for research about skills and resources for families to become effective, knowledgeable, and confident supporters of their member with intellectual disability in the quest for adult self-determination

Issues of sexuality and relationships

Sexuality in the lives of people with intellectual disability is almost always conflated with sexual abuse, sexual behaviours, sexual knowledge and questions about capacity to “be” sexual. Rarely is sexuality discussed in a more holistic way that acknowledges pleasure, desire, identity and “self-authored” sexual expression. Writers like Michael Gill (2015) suggested this is due to sexual ableism which he defined as “the system of imbuing sexuality with determinations of qualification to be sexual based on criteria of ability, intellect, morality, physicality, appearance …” (p. 3). Through this lens, sexuality in the lives of people with intellectual disability is mediated by ideas about capacity and competence, assumptions of desirability and overshadowed by a discourse of risk and vulnerability. Foley (2017) reported that underpinning this discourse is a “paternalistic regime” whereby the sexual lives of people with intellectual disability are strongly surveilled, often by parents or other caregivers. He described this regime as being played out where people with intellectual disability, despite their chronological adulthood, “either must ask permission and/or are prevented by their parents from taking control over their social/sexual lives” (p. 6)