A question of perspective—parenting and other matters in the lives of people with learning disabilities

Abstract

Half of this first issue of 2021 is taken up with papers that discuss parents’ perspectives. This is a familiar topic in the field of learning disabilities and one that retains its relevance today. Here though, we see some questions addressed that have gained less attention in the past. For instance, Carmel Doyle’s paper about the challenges of giving medicines to children with severe and profound learning disabilities is based on research about mothers’ experiences. Here, we see the importance of listening to mothers’ accounts of responding to what was happening with their child through a mix of observation, instinctive knowing and tuning in to changes they alone might perceive by knowing their child so well. Doyle makes a strong case for providing mothers with support in giving medicine as they develop their skills in this area. Fathers provide the focus for the next papers. Harriet Cameron and Louise Cooper argue that fathers of children with autism and learning disabilities are less well-understood. Through their exploration of the perspectives of four fathers, we see the concerns about fatherhood, particularly not doing enough or getting it right. This paper shows how anxieties and emotional strains, along with joy and hope, are “dynamically produced within their daily encounters with particular normative assumptions, cultural expectations and social judgements constructed in the home, work, school and social environments that fathers have to negotiate.” There is even less research on fathers with learning disabilities, and this is the focus of the paper by Jon Symonds, David Abbott and Daryl Dugdale. The quote in their title, “Someone will come in and say I'm doing it wrong,” not only shows the anxiety about getting fatherhood right here too, but also highlights added vulnerability to judgement. These fathers were not well supported by services, and the authors call on professionals to have greater engagement with fathers when working with families. It is this paper that Sunderland People First chose to focus on for their In Response article. The self-advocates appreciated the way the research was done, the plentiful examples and voices of the dads involved. They echo the importance of raising awareness about the topic. Two more of the papers in this issue illuminate family perspectives. For Jon Codd and Olivia Hewittt, the focus is on parents’ perspectives on the transition to adulthood for their son or daughter with learning disabilities, though the main researcher is a sibling rather than parent. The findings show the difficulties and heightened uncertainty at this critical time in people’s lives when navigating services is particularly challenging. Lastly, from Agnes Turnpenny and colleagues we hear the perspectives of family members who manage direct payments in moves towards more person-centred support. They show their motivations, experiences of the challenges involved and mixed emotions about taking this on and how the path to achieving the aspirations to give greater choice and control of support for their family member was often rocky. Common across all these family-focused papers is a willingness to explore in depth people’s lived experiences as they see them, to recognise the importance of family members in people’s lives and to educate professionals on these matters. The remaining papers cover a range of perspectives. This includes the perspectives of people with learning disabilities who do not eat meat because of their concerns for animal welfare. As author, Claire Bates, points out, there is little accessible information on meat-free diets for this group. Turning attention to the Basque Region of Spain, Garazi Yurrebaso Atutxa and colleagues share the perspectives of educational professionals on best transition practices for young people with learning disabilities becoming adults. Transition when leaving school is also the focus for Helen Connaughton and Tony Cline in their paper, this time looking at how theory influences the planning for one 17 years old. While the perspectives of the young woman and those supporting her are important, the research also shows how wider societal perspectives can remain limiting. Next, in the paper by Rengina Giannaki and Olivia Hewitt, we hear from people with learning disabilities and anxiety (and the people supporting them) on their experiences of participating in a cognitive behavioural therapy group. The final paper by Ariel Schwartz and colleagues brings in the perspectives of young people with disabilities in the process of creating patient-reported outcome measures as an easy-to-use way to tell their doctors and therapists what they think and feel. It is a good paper to end on as it underlines a theme in the journal of the ways in which different researcher and researched perspectives are important and can be brought together in the interests of people with learning disabilities. During 2020, the editorial board worked on various journal developments, all in the spirit of ensuring that the British Journal of Learning Disabilities is fit for the next decade. We have introduced the response papers by people with learning disabilities as part of our desire that the journal fosters dialogue between researchers and the people their research is about. We have also worked on making information about the journal accessible. This began with our aims and scope in easy read and audio versions to go alongside the recent easy read guidance for authors with learning disabilities. It has extended to other important documents such as calls for papers. Like other articles, the editorials now have accessible summaries too. And most importantly perhaps, we have introduced video abstracts. You can see our first one with the paper by Sofie Sergeant and colleagues among our early view papers: https://onlinelibrary.wiley.com/doi/full/10.1111/bld.12357. We know that video can be a very accessible medium, and we hope that most authors will want to accept the offer for us to publish a video-recorded summary of what their paper is about and why it is important. These video abstracts will be free to view for all. In addition to enhancing the ways in which the journal is relevant and accessible to people with learning disabilities, the editorial board has worked on ensuring that the papers we publish are of the highest ethical standards. To this end, a careful, iterative and reflective process of dialogue led us to create the new ethical guidelines available in the Aims and Scope part of the journal’s online Author Guidelines https://onlinelibrary.wiley.com/page/journal/14683156/homepage/forauthors.html. This process was complex because of the need to respect cultural and national procedural differences as well as to ensure respectful treatment of people with learning disabilities and their privacy, dignity and data at all times. We are sure that we will come back to these guidelines in the near future, but for now they represent a position we are happy with. Finally, looking ahead, 2021 sees special issues being published and a call for papers for our anniversary special issue in 2022 on 50 years of the British Journal of Learning Disabilities: The power of the past. See the call for abstracts from the international guest editing team, including an easy read version, on the journal home page https://onlinelibrary.wiley.com/journal/14683156. The special issue dedicated to the history of learning (intellectual) disabilities across the globe is a reflection of the journal’s long association with the social history of learning (intellectual) disabilities and with making history in its pioneering publishing of inclusive and co-researched histories. I end this editorial with the observation that as well as encouraging submissions on current, even urgent, questions about life with learning disabilities in very challenging pandemic times, the editors have a keen interest in global and historical perspectives in addition to the role perspectives represented in this issue.