"Welcome to the Real World" Inclusive Research with People with Learning Disabilities: A Doctoral Journey

As a result of an intricate range of cultural, economic and social factors, contributions by people with learning disabilities to the production of knowledge have been at best marginalised and at worst rendered silent. Indeed, many people with learning disabilities have been and are still been excluded from an active involvement in research (e.g., Townson et al., 2004). In the United Kingdom (UK), this position has been increasingly challenged by self advocacy groups of people with learning disabilities and their academic allies, through the advancement of inclusive research (Johnson, 2009). Nind (2014a) emphasises how "inclusive research acts critically on the relationship between those who research and those who are researched to make the research more collaborative and relevant" (p. 525). Calls have therefore been made for a clarification of the roles that can be played by nondisabled researchers and research supporters, so that asymmetrical relations between them and people with learning disabilities can be exposed and inclusive research practices can be developed further (e.g., Walmsley, 2004; Williams et al., 2005); together with a better understanding of quality in inclusive research (Nind, 2012). In response to these matters and through this paper, I offer an account of my doctoral experiences of applying inclusive principles to research with people with learning disabilities, as a nondisabled researcher (Durell, 2013). While it will present critical insights into inclusive ways of doing research from a learning disability perspective, it can still offer data that is of relevance to researchers working beyond the field of learning disabilities and seeking the active participation of different groups in the research process. Consequently, people whose first language is not research can have a say in the production of knowledge and they can be credited not only as members of research communities but also of their societies.First, I will introduce the term "learning disabilities" and how it is defined by international and national organisations and by people with learning disabilities and their associations in the UK. I will then turn to the concept of an inclusive approach to research with people with learning disabilities. This will be followed by an overview of my PhD study and the aims and objectives of this research. I will also present an outline of this study's research advisory group and focus groups which will include the aims of the groups, the accessible materials that were designed and developed for prospective group members, the recruitment process, their membership and the general format of the meetings. I will then focus on the contributions of the nondisabled research supporters to the groups' activities and to the facilitation in the co-production of knowledge by members with learning disabilities. Where applicable, I will attribute a pseudonym or name initials to each quotation or idea from a research advisory group or focus group member to the appropriate individual, with the intention of maintaining their anonymity from the reader. Finally, I will conclude by reiterating how through the translation of inclusive research principles, people with learning disabilities can have a say in the knowledge production process.Learning Disabilities: Terminology and ApplicationsIn the UK, the term "learning disabilities" is commonly applied within health and social care policy, practices and provision. But many people with learning disabilities and their self advocacy groups favour the phrase "learning difficulties" which is a term that is also generally used within educational settings and refers to people with specific learning difficulties such as, dyslexia (Gates & Mafuba, 2016). Learning disabilities replaced previous terms that are now perceived as derogatory and obsolete, such as "mental handicap," "mental retardation," "mental subnormality" and "mental deficiency. " Other terminologies are used in other countries and at an international level, like for instance, "intellectual disabilities. …