This proposal draws upon thinking that has grown out of a research project in Ukraine that examines the views of the parents of disabled children in a time of conflict. Over 400 parents, from all 25 oblasts (regions) of Ukraine, responded to a request from Disability Rights International to share their lived experiences of caring for a disabled child.

For context, in recent years, the Ukrainian government has committed to transforming the national care system for children, as outlined in The National Strategy of Reforming the System of Institutional Care and Upbringing of Children (2017-2026), in line with the requirements associated with the EU Aquis Communautaire This requires practices in accordance with, amongst others, the guiding legal framework of the United Nations Convention on the Rights of the Child (UNCRC), the United Nations Guidelines for the Alternative Care of Children, and, for children with disabilities, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).  

In 2022, the Committee on the Rights of Persons with Disabilities published guidelines on Deinstitutionalization, including in Emergencies, which noted that:

“Institutionalization is a discriminatory practice against persons with disabilities, contrary to article 5 of the Convention. It involves de facto denial of the legal capacity of persons with disabilities, in breach of article 12. It constitutes detention and deprivation of liberty based on impairment, contrary to article 14. States parties should recognize institutionalization as a form of violence against persons with disabilities. It exposes persons with disabilities to forced medical intervention with psychotropic medications, such as sedatives, mood stabilizers, electro-convulsive treatment, and conversion therapy, infringing articles 15, 16 and 17. It exposes persons with disabilities to the administration of drugs and other interventions without their free, prior and informed consent, in violation of articles 15 and 25” (2022, p.5).

These guidelines, taken alongside the research undertaken in Ukraine, raised a number of points for discussion about practices in the UK, and possibly other national contexts in the EU.

In the first, an analysis is needed about the adoption and use of terms such as “discriminatory practice”, “detention and deprivation of liberty based on impairment”, “forced medical intervention” and “the administration of drugs and other interventions without their free, prior and informed consent”.

Secondly, consideration is needed about the use of the term ’institutionalisation’. Eurochild describe an institution for children being “any residential setting where ‘institutional culture’ prevails” (2021, p.5), and goes on to identify three aspects of institutional cultures:

a)      Children are isolated from the wider community and obliged to live together.

b)     Children and their parents do not have sufficient control over their lives and over decisions that affect them.

c)      Children are separated from their families and familiar surroundings, which leads to a loss of their sense of identity. Long distances between children’s placements and their immediate families, as well as unaffordable transport costs compound the issue of segregation (2021, p. 6).

Thirdly, consideration is needed surrounding differences between the use of ‘institution’, ‘institutional cultures’, and ‘institutionalisation/institutionalised’, and the value judgements that are entrenched within those usages, by asking whether practices within a setting define the usage, or whether the term defines the practices.

In response, the objective of this paper is to turn a light on practices in the UK that, by these definitions, might be seen to violate a number of articles in the UNCRPD. These include practices such as prolonged periods of isolation for young people with autism, placement in children’s homes located at considerable distances from the family environment, and legally acknowledged practices that do not meet any definition of a basic duty of care.

Given the aforementioned concerns about divergence between policy and practice (shrouded in a lack of understanding of terms in common use) and by normative assumptions about practices that pass unchallenged, the approach taken in this paper sits within cultural analysis. Specifically, we intend to explore how Lévi-Strauss’s notions of ‘myths’ and ‘mythemes’ can be used to elucidate how policy myths play out in the real world. In terms of policy myths, Lévi-Strauss argued that the sociological purpose of a myth is to function as “a kind of logical tool that helps a society to handle problems where experience and theory contradict each other” (1963, p. 216). It seems, therefore, logical to argue that an exploration of myths could achieve the same purpose if they were to be positioned as a means by which contradictions between policy and practice could be explored. A real-world example of this is the use of isolation practices with autistic people in settings regulated by the National Health Service in the UK. Despite a plethora of policies that conform with UN and EU regulations, examples of degrading treatment of disabled individuals in the UK are regularly reported in the media. In addition, Lévi-Strauss noted that mythemes “rear throughout the myth” (1963, p. 211), and, as such, conceived the unfolding of a myth as conceptual repetition rather than as the detail of a narrative. In terms of the example cited above, the mythemes of detention, discrimination and degradation are seen time and time again in the enactment of policies designed to care for disabled and vulnerable children and young adults. As such, Lévi-Strauss’s work demands an acknowledgement that structural meaning is positional in nature and can only be available to us by reference to what we know about the way of life and social organisation of the societies whose myths we want to analyse. We cannot discern policy myths from a distance, to attempt to do so would be to disregard the lived experiences of the members of society for whom the policy was formulated. Nor can the policy makers divine the effectiveness of what they have formulated by occasional regulatory oversight.

The purpose of this paper is to reconsider what is meant by institutionalisation and, by corollary, deinstitutionalisation, in societies that have ratified the United Nations Convention on the Rights of the Child (UNCRC) and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Such terms are conceived, and enacted, in different ways across national contexts which offers broad scope for discussion. The backdrop to this paper is that of the lived experiences of disabled children in Ukraine, moving towards deinstitutionalisation at the time of writing this proposal. For those countries who do not have deinstitutionalisation as a policy target, it can be easy to condemn the types of institutional practice that are currently taking place in some parts of Ukraine. However, although it is important that practices of this nature are properly critiqued, it is crucial that they do not encourage a blinkered view of what we mean by a loss of liberty or isolation from the wider community. Policies are made in the context of multiple human activities, experiences, purposes and needs (Avramadis, 2013) and are enacted in a similarly complex web of intentions, understanding and experience. By drawing upon practices in the Global West, we hope to provoke debate around the language that we use to describe practices that include or exclude. In this sense, we will be considering three differing cultural perspectives: that which operates at the UN/EU policy level; that which represents national policy; and that which characterises a community attempting to negotiate their place in society.

Avramidis, E. (2013). Self-concept, social position and social participation of pupils with SEN in mainstream primary schools. Research Papers in Education. 28 (4) 421-442 Committee on the Rights of Persons with Disabilities (2022) Guidelines on Deinstitutionalization, including in emergencies. Available at: https://www.ohchr.org/en/documents/legal-standards-and-guidelines/crpdc5-guidelines-deinstitutionalization-including Eurochild (2021) Deinstitutionalization of Europe’s Children. Available at: https://www.eurochild.org/uploads/2021/02/Opening-Doors-QA.pdf Lévi-Strauss, C. (1963) Structural Anthropology (trans. Claire Jacobson & Brooke Grundfest Schoepf.) New York: Doubleday Anchor Books UNCRC (1989) United Nations Convention on the Rights of the Child. Available at: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-child United Nations Guidelines for the Alternative Care of Children (2010) Available at: https://digitallibrary.un.org/record/673583?ln=en UNCRPD (2006) United Nations Convention on the Rights of Persons with Disabilities. Available at: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html#Fulltext