Editorial: An international showcase

Abstract

In my last editorial, I shared news of our consultation with people with learning disabilities on six potential special issue topics. We were pleased that there was lots of interest in the process and that we heard from many individuals and groups keen to steer our content focus. I can now report that there was most interest in the topic of health inequalities and the impact of this on people with learning disabilities. The COVID-19 crisis has no doubt helped to underline the importance of addressing health inequalities in the UK and around the globe. The call for papers for the special issue from the guest editor team led by Hazel Chapman will be out soon. The emphasis will be on understanding health as a human rights issue, building on the recognition of the United Nations Convention on the Rights of Persons with Disability that persons with disabilities have the right to enjoy the highest standard of health without discrimination based on disability.

In this issue of the journal, I pick up on how much interest there was in all the special issue topics proposed. To reflect that interest, I have chosen to make the first part of this issue themed around the lives of people with intellectual and developmental disabilities around the world, which was the runner up topic in the consultation. The selection of papers illustrates that, regardless of our journal name and association with the British Institute of Learning Disabilities, this is very much an international journal that welcomes papers from around the globe.

We start in the Czech Republic with a paper from Dagmar Sedláčková and colleagues on the experiences of mothers of children with profound intellectual and multiple disabilities in the geopolitical context of postcommunist European countries. The authors situate their interviews with the mothers in the historical context of prevailing institutional care and absence of rights, services and options ahead of the familiar move towards deinstitutionalisation and opening up of education in special schools for children with profound intellectual and multiple disabilities. The paper shows the impact of the availability of functional support on families and lives through the lens of mothers in a country that many readers will be less familiar with.

Staying with parental perspectives, the next paper takes us to the Hong Kong Chinese context and the sensitive topic of the sexuality of young people with intellectual disabilities. Here again we see careful handling of the cultural context as it impacts on parents’ concern, reluctance and prohibition of their sons’ and daughters’ sexuality. The conservatism and stigma of the culture are evident through the participants’ voices as is the authors’ concern with the human right of people with intellectual disabilities.

The next paper from Ann Dhondt and colleagues takes us to Belgium and provides an analysis of early expressive communicative behaviour of young children with significant cognitive and motor developmental delays. There is little reflection of the cultural context in this paper as that is not the point of it; nonetheless I am struck by the rich resources and strong professional interest coming from this country where there is leading work on the lives of children with profound intellectual and multiple disabilities.

Moving to professional perspectives, the next papers take us to Ireland and to Chile. For Eileen Carey and colleagues the focus is the Irish perspective on placement opportunities accessed by students on undergraduate Nursing (Intellectual Disability) programmes. The national context here is significant in that while globally there are few countries with undergraduate programmes to train nurses to support people with intellectual disabilities, Ireland has eight providers of such programmes. With cultural change, however, the authors are interested in the move from practice placements in more segregated or institutional contexts to practice placement in more mainstream, inclusive services. Again we see cultural contexts as dynamic rather than static entities. For Izaskun Álvarez-Aguado and colleagues, the focus is on the quality of life in adults with intellectual disabilities and mental health problems in Chile, seen through the eyes of the professionals working with them in various care services. We gain interesting insights into the Chilean policy and practice context, where there are legacies of old systems holding back transitions to better lives.

We end the mini world tour of our international showcase in Iceland where Sara Stefánsdóttir and colleagues tell the story of parents with learning disabilities fighting to maintain their life as a family. This time through the lens of an in-depth case study, we again see all the contextual impact of an international rights movement played out locally. Another global context here is the arrival of the COVID-19 pandemic, which leads us on to the second part of this issue.

The COVID-19 pandemic provides a strong link between the focus in this issue on showcasing research from around the globe with the upcoming special issues on digital inclusion (next issue) and health inequalities (next year). My final selections for this issue all focus on the impact of the pandemic. Pippa Higgs and Jennifer McElwee (in Wales) share their research on how a Child Development Advisor (or Portage) service adapted to pandemic conditions to continue to provide developmental support to children and emotional support to their families, as they were forced to switch from home visiting to telephone/video consultations. As with much pandemic-based research, we see vital lessons learned that will have an impact on ways of working into the future. Next, Fintan Sheerin and colleagues (in Ireland), focus on staff mental health while providing care to people with intellectual disabilities during the pandemic. The challenges of the pandemic context are vivid in the paper and critical to ongoing support to people with intellectual disabilities who we know have increased vulnerability to COVID-19 illness and higher mortality rates. It is the need for research into “long-COVID” or “post-coronavirus-19 syndrome” among people with intellectual disabilities that Greg Rawlings and Nigel Beail address in their paper. They argue that the neglect of this area of research must be rectified.

We end this issue with a more uplifting look at staying connected during the COVID-19 pandemic. The paper on this theme by Natasha Spassiani and colleagues, and the article In Response to it by Nathaniel Lawford and colleagues, ensures we do not leave the issue without hearing from people with learning disabilities directly. This final pair of papers presents their perspectives as researchers and as people for whom the pandemic presented particular challenges as well as some familiar resolutions.