Dedifferentiation in context

KEYWORDS:

• Intellectual disability
• conceptualisation
• twenty-first century
• multiplicity

Dedifferentiation describes a change that occurred in many developed countries during the 1990s: away from regarding people with intellectual disabilities as having particular needs resulting from cognitive impairment and, instead, treating them as members of the broader group “people with disabilities”. This policy continues to shape health and social care services. We reviewed research on the impact of dedifferentiation on people with intellectual disabilities three years ago (Clegg & Bigby, 2017): a summarising position statement was subsequently published by the Australasian Society for Intellectual Disability (2018). In sum, this argued that dissolving intellectual disability responds to self-advocates’ requests; it has been most successful in primary schools and child mental health services. Problems associated with dedifferentiation arise from disability rights groups ignoring significant embodied and emotional needs experienced by people with intellectual disabilities, and from representing people with intellectual disability as homogeneous despite the high heterogeneity of this population. Mainstream staff not knowing how to accommodate people with intellectual disabilities is also an issue, which generates recommendations to train such workers without any scrutiny of how realistic this is.

New perspectives and opportunities have been created for people with intellectual disabilities most often by people with experience of the subtle negotiations and accommodations required. For example, Kulick and Rydström’s (2015) research into Danish support for the sexual lives of people with intellectual disabilities emphasised the degree to which disabilities confound and redefine boundaries between private and public, helplessness and independence, intimacy and distance. A certification course for sexual advisors developed and run by two men who were teachers of children with intellectual disabilities, Buttenschøn and Løt, was crucial to the Danish response. They taught a generation of specialist social workers and teachers how to demarcate limits that allow for assistance while preserving the integrity and dignity of all parties.

Three years on from the Clegg and Bigby review of dedifferentiation, papers in this special section move its consideration to the next level. They are by researchers at different career-points, from different countries, and have been developed from papers presented at the Ethics Special Interest Research Group [SIRG] symposium to the 2019 congress of the International Association for the Scientific Study of Intellectual and Developmental Disability [IASSIDD].

The set opens with a review of evidence concerning the National Disability Insurance Scheme (NDIS), a new approach to individualised funding for long-term disability support introduced in Australia. Bigby (2020) examined evidence concerning the NDIS from its introduction in 2014–2020. It was designed to respond to individual choice, and dedifferentiated: funding is allocated by capacity to function rather than according to classification or diagnosis. Adults with intellectual disabilities are the largest single group within the NDIS, yet the review identified a fundamental mismatch between its administration and the types of planning most suited to this group. It was not designed to address the modes of existence or the communication style of people with intellectual disabilities, and most of the planners lacked relevant knowledge and skills. Bigby tracked changes in the NDIS over time in response to critiques, which have addressed some issues particular to people with intellectual disabilities. Yet while separate access pathways have been created for other groups with particularly complex disabilities, people with intellectual disability were missed out. The strategic advisers required to specify their needs were not appointed, and so no NDIS access pathway has been designed to meet them.

King (2020) detailed the impact of NDIS on one specific group in Australia, people with profound intellectual and multiple disabilities. She argued that because the needs of this group lie furthest from everyday experiences of human life, they test dedifferentiated policies the most. NDIS addressing a much larger population of people with any disability had increased political power. Every person in King’s sample eventually received far more financial support than had been available to them previously, some up to ten times more. Yet parents believed they had not used the right words initially to trigger the support they needed: algorithms underlying the scheme seemed to make planners deaf to what they were saying. Accessing these sums had required refusal to work with inappropriate planners, and challenging decisions that failed to acknowledge the person’s need for high intensity support. King criticised dedifferentiation for putting such emphasis on dismantling social barriers, because this focus disembodied people with profound and multiple needs.

Chinn and Pelletier (2020) studied the way that Easy-Read texts were co-produced and how this process positioned participants with intellectual disabilities. Reinders (2019) had previously characterised co-production as elevating Experts by Experience to the role of proto-professionals, arguing that co-production strips out personal accounts of living with intellectual disabilities and so disowns people of their stories. Chinn & Pelletier concurred that personal stories were often disallowed as irrelevant to the task in hand. Their analysis identified two significant and contradictory tensions relevant to debates about dedifferentiation. First, in seeking to produce one leaflet that was comprehensible to a single imagined audience of people with intellectual disabilities, differences both between participants and within their audience were erased by facilitators’ consensus-driving strategies. Second, rather than unsettling the category of intellectual disability the process reconstituted and cemented it in new ways, because participants could only speak from a position of deficiency.

Bjorne (2020), Chair of the IASSIDD Ethics SIRG, outlined and applied a recent conceptualisation from philosopher Appiah (2017), As If. This significant small book unravels the utility of models or idealisations that, by reducing complexity, reduce cognitive load to enable a specific issue to be considered. Appiah offered an important reminder that models or idealisations chart some, but not all, aspects of the world. Whether a map of roads or of mountains and lakes is most useful depends on whether we are driving or walking. Any map becomes problematic when the limits of the “as if” assumptions it is based on are forgotten, and it comes to be regarded as the only possible map of that territory. So the problem with dedifferentiation is that it treats people with intellectual disabilities as if they are no different from people with physical or sensory disabilities when this is only a partial truth: useful in some situations and not useful in others. Bjorne draws out Appiah’s argument that the usefulness of any “As If” assumption depends on its contexts and purposes. She applied this analysis to Swedish housing policy to examine whether the goal that people with intellectual disabilities should Live Like Others was still useful or valid.

The final paper by Banks (2020) argued that dedifferentiated policies promoting independence are based on a romanticised view of possible modes of existence for people with intellectual disabilities. For example, emphasis on people with intellectual disabilities finding paid employment in England overlooked the 94% of this group who do not have a paid job, and changes in Australian employment law that had reduced rather than increased access to paid work there. Banks examined employment in an ethnographic study that inter alia compared two projects. One aimed to prepare people with intellectual disabilities for competitive open employment and move them on, the other provided a long-term, sheltered situation that enabled each person with intellectual disability to belong and contribute.

The open employment project stated this in its documents: “Having a paid job should therefore be seen as the default outcome for young people with a learning disability.”¹ When interviewed on national media its chief executive officer identified supportive provider services as part of the problem, because they create a barrier between people with intellectual disabilities and normal life. He focussed instead on “real world” work skills of punctuality, productivity, and enthusiasm for tasks. Banks observed a variety of ways in which this deprived participants of the emotional and practical support they required. She argued that dedifferentiated research on employment had created confusion: the rhetoric that paid employment is a real possibility for all people with disabilities masks the situation of the vast majority of people with intellectual disabilities. The comparison project, a community café, was run by Steve Collins who sought to provide the extra support that allowed each person to discover a meaningful role that lay within their capacity. “In return, they get value and pride that they are giving a service, and they also get a rhythm of life … .. It works here because our aim is to be a supportive, welcoming environment.”

Conclusions

These papers invite reconsideration of how far the concept of dedifferentiation should influence policy in the contemporary context. The dedifferentiated Australian NDIS was developed to guarantee long-term funding for people whose disabilities were permanent. However, it was commonly administered by planners who did not understand the breadth and multiple nature of intellectual disability, and who did not know how to communicate and facilitate meaningful self-determination. At best dedifferentiation increased the bargaining power of a small, vulnerable, ignored group. At worst it masked the difficulties adults with intellectual disabilities experience as they attempt to fit into cultures dominated by neoliberal individualism. There was evidence of disowning people from their stories, and of disembodying people from life-threatening health conditions. It also ignored boundary and communication confusions that render sensitive issues so troubling for all parties. These and other researchers are holding both dedifferentiated and differentiated approaches in mind until they provoke fresh thinking. The following are some possible new trajectories:

1. Hold open a space where the multiplicity of intellectual disabilities can exist by preferring the term “intellectual disabilities” to “intellectual disability”.

2. Ensure that multiplicity extends to conceptualisations of support. It has long been observed that approaches to intellectual disability tend to be monolithic, to seek one right way of doing things (Blatt, 1981/1999) until it is overturned by the next “magic answer” (Potts & Howard, 1986). Appiah’s As If establishes the importance of viewing ideas within their necessarily limited context: what are the relational or situational circumstances that make particular approaches helpful to whom?

3. Identify when it is feasible for mainstream staff to learn enough about intellectual disabilities to be effective and supportive, and when the issues are so complex and the skills required to address them so extensive that specialists are required.

4. Move on from twentieth century battles about using the right words: revisit actions and the unspoken. Tackle the discomfort felt by community members (Meininger, 2008) that drives resistance and rejection, and the shame that makes people with intellectual disabilities emphasise their able-ness, and join movements that skate over the surface of their lives (Barnwell, 2019; Kulick & Rydström, 2015). Goffman (1963) described people privy to the secret life of stigmatised individuals as “the wise”. They tread an invisible line, treating the person as if their cognitive and other disabilities do not exist while also making the accommodations these entail. Anybody with practical experience of projects where people with intellectual disabilities flourish will have had the good luck to encounter a person like Steve Collins, who did just that.

Dedifferentiation is a twentieth century concept. Growing evidence of how badly people with intellectual disabilities suffer during conflict (Rohwerder, 2013) and recession (Forrester-Jones et al., 2020) means that the twenty-first century needs new ideas. Some are developed in the following papers. Others are contained in papers from a complementary symposium at IASSIDD 2019 on the concept of Encounters, which will be published in JIDD Vol 46, issue 1, guest-edited by Christine Bigby. Together these point towards a new idealisation: one that places relationships above independence and materiality, and focuses on both people and their context.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Learning disability is a British term akin to the international term “intellectual disability”.