Editorial

The seven articles within this issue of Child Care in Practice challenge us in a number of ways to re-define how we understand disability and the fact that disability occurs within a family and societal setting.

A good starting point for this discussion is offered within the article by Thomas-Skaf & Jenney (2020). There can be a tendency for words such as “Disability” to be used in a general, catch-all sense, without realising either the complexity, variation or negative presuppositions which over time can come to be associated with it. This article challenges us to confront this through developing an understanding of the concepts of “Ableism” (the proliferation of discourses and practices about being “normal”) and “Disableism” (which can be defined as the negative attitudes and attributes associated with disability). Quoting from the paper, “Disableism involves the erasure of a disabled person’s capabilities and humanity because of their real or perceived impairments, which results in prejudice, discrimination, and oppression” and the article goes onto describe a number of examples. It leads to the insight that Disability and Disablement occur on a number of levels – not just the physical.

In the article by Flynn (2020), the author looks at barriers to effective child protection and welfare assessment with disabled children, and also focusses on understandings of “Ableism” within the child protection context. Flynn (2020) cites the global definition of social work provided by the IFSW in 2014 which promotes a vision of empowerment and liberation with respect for diversities (and not just cultural ones) and acknowledges that given the pressures upon all our services, finding time for reflective practice is not easy. However, there is a need to change the narrative from the negative to the positive, which we can do through (i) an emphasis on children’s rights (ii) learning from disability to improve practice with all children and (iii) a focus more towards solutions and safety, rather than prolonged consideration of problems and causation.

A number of the articles in this issue highlight specific aspects of disability and also the fact that many of these are linked or can occur as a consequence of each other. The article by Yesilkaya et al. (2019) is a first good example, highlighting disability which can occur as a result of visual impairment. The article raises awareness that disability not only affects a specific individual, but the wider human family around them – their immediate family, as well as educators and others. As one of the authors above comments “disability is a socially constructed experience”. Given some of the pressures cited above, the link between research leading to evidence which can inform practice often seems hard to make. This article, in the form of a scoping review, is an excellent example of why this link is critical to all practitioners, as it aims to “identify, collate and appraises the available research evidence on implementation barriers and facilitators of interventions for children with visual impairments, their parents/ guardians or educators” which can then lead not only to integrated working but also lead to positive changes in future practice (Yesilkaya et al., 2019, p.1).

The second article by Flynn (2019) relates to the impact of austerity measures, arising from the Irish economic recession in 2008 and beyond, on intellectually disabled young people and their families. The intention, as with Yesilkaya et al. (2019), is to lead to positive changes in future practice. Flynn (2019) uses a Framework Method of analysis applied to transcripts produced from a Biographical Narrative Interpretative Method (BNIM) of interviewing, across a sample of eight participants, which included two intellectually disabled young people, three parents of intellectually disabled young people and three social workers in disability services. Within this, distinct concerns for practice with intellectually disabled children and young people were identified, such as the potential for practitioners to mis-conceptualise some behaviours that challenge as arising from impairment rather than poverty.

A further specific aspect of disability, or intellectual disability, is covered in an article by McCafferty and McCutcheon (2020), focussing on Autistic Spectrum Disorder (ASD). One significant insight to derive from this article is that Disability is not simply something to be overcome. Conditions such as ASD are life-long developmental disorders, and as above, affects the family the child is a member of, both parents, and most often the mother in particular. While the principal focus of the article is in adding to the literature on the impact on parents caring for a child with ASD, one of the propositions asserted within the article is that the social work profession centres around holistic practice. While not denying this proposition, there are challenges here from the perspective of holistic thinking; identifying how social work should work alongside other professions (i.e. in multidisciplinary teams and the role/position of the social worker in these teams); and the demands made upon social workers and other child care professionals to update and become aware of issues in clinical and professional knowledge – ASD is identified here as a clear lack and as a consequence it becomes difficult for social workers and others to understand the impact ASD can have upon a family. Is there the honesty to admit the need? How do all these needs get prioritised and how or where should this training and updating be provided?

Another interesting and perhaps even more challenging insight is provided within an article written by Krstić et al. (2019) which describes a six-week support program for parents of children with developmental disabilities. The aim of the programme is to achieve a state of resolution, defined as a process of acceptance and coming to terms with the child’s health condition, which then aims to achieve a state of wellbeing for the entire family. Quoting Fletcher within the introduction to the article, we read that

during pregnancy, most parents form expectations and fantasies about their future child … these thoughts tend to be optimistic, aimed at birth of a “perfect” child … parental hopes and expectations can be shattered when they discover that their child has a developmental disability and this experience can be metaphorically described as the loss of the “perfect” child they wished for (and) parents are overwhelmed by emotions and tormented by many questions regarding guilt and blame, as well as by fears of what the future might bring. (Krstić et al., 2019, p. 1)

Any parents, mothers in particular, who usually bear most of the responsibility for child raising, will of course, experience a range of emotions and thoughts on discovering that their child has a developmental disability, which may include fear for how to care for the child. But as it stands, this almost goes back to the notions of “ableism” and “disableism” described above. Is the question really one of “resolution” or of “loving acceptance and support”?

The counterweight to the above is the final article from Fylkesnes (2020) which examines how to establish communication with severely disabled children in Norwegian small group homes – full-time residential institutions that have outlived the deinstitutionalisation processes of the early 1990s. Fylkesnes (2020, p.4) comments in her article that “A severely disabled child is often defined as having a low level of cognition, thus, giving rise to limited expectations from others of the disabled child’s capabilities of relationality and intentionality, and to the child’s communicative capacity”. But as the article, in fact, discovers and affirms, this is NOT the case. Communication is at minimum a two-person process and does not have to be limited purely to verbal cognition. Sounds, as well as body movements, and facial expressions can be equally, if not more, communicative than just spoken words. Similar to principles of counselling, which call for a person to be totally present and listening wholly without distraction to the other person, the article uses a number of methodologies which effectively disprove the above dictum that there should be limited expectations regarding severely disabled children’s communicative capacities. Speaking as a former teacher, who has in the past, spent some time working with hearing impaired as well as intellectually disabled children, I can testify to the fact that not only can these children communicate well, but they often do so far more lovingly and with more willingness to learn than their verbally cognisant counterparts!

In a short space of words, it’s difficult to do justice to all of the depth contained within these articles. What I have attempted to do here is highlight some of the points which as academics and practitioners we need to be challenged by. One final reflection – how many of us can say that we ourselves are not disabled in some way. What about the person who is effective intellectually but useless with their hands? What about the person who is useless at Maths but brilliant in Social Work? The truth is we all have our limits and our disabilities and perhaps this realisation should give us pause for thought when we come to work with those we class as “disabled” and as Flynn suggests, change the narrative from the negative to the positive.