Moving towards full citizenship and inclusion for people with intellectual disabilities

Five articles in this issue of Research and Practice in Intellectual and Developmental Disabilities (Bach, 2017; Duffy, 2017; Espiner & Hartnett, 2017; Johannes, Belden-Charles, & Serminj, 2017; Woudzia, 2017) had their origins in papers presented at the 2015 “Claiming Full Citizenship Conference” hosted by the Centre for Inclusion and Citizenship in Vancouver, Canada. The conference was envisioned as a follow-up to the Seattle conference in 2000, “Funding, Freedom, and Citizenship”, which was the first major international conference on individualised funding and related supports to self-direction. The initial idea was to take stock of what we had learned about implementing individualised funding and self-direction in the ensuing 15 years and chart a course for the future in the era of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD; United Nations General Assembly, 2006). What became clear very early on in the process was that the debate on citizenship had progressed significantly since 2000 and the focus of the debate has expanded well beyond simple questions about how to design and implement policy. As the five articles noted above demonstrate, questions of citizenship are intimately bound up with questions of recognition, voice, relationships, and community. A United Nations convention or a set of policy instruments, while vital to realising citizenship, are neither sufficient nor comprehensive enough to achieve full citizenship and inclusion.

The related notions of citizenship and inclusion, often used in tandem, provide a useful way to distinguish the strands of the discussion and the relationship between them. I take citizenship to mean the range of formal recognitions (e.g., laws, policies, rights) and the instruments needed to effectively implement them (e.g., programs, supports, interventions). Inclusion, on the other hand, speaks to the way of being and belonging in community; our connections to others, mutual respect, and a deep sense of equality that goes beyond the formal equality that may or may not be present. While formal citizenship can be achieved through lobbying, advocacy, and political action, inclusion cannot be legislated or mandated. While it can be fostered, promoted, and celebrated through a host of programs, projects, and campaigns, ultimately it is something that must be felt rather than enforced.

There has been much progress on the citizenship front over the past 20 years or so, culminating in the passage of the UNCRPD (United Nations General Assembly, 2006). We have learned much about what kind of structures and policies support full citizenship for people with disabilities; individualised or direct funding, some form of planning and facilitation, and a robust regime of supports to articulate choices through mechanisms such as supported decision-making (Stainton, 2005). We have seen major progress on implementation, notably the ambitious National Disability Insurance Scheme¹ in Australia, along with similar initiatives across the globe.

On the inclusion side, we again have seen much progress with the closure of institutions, improved access to inclusive education, and greater public visibility and understanding of people with disabilities. We have also learned much about the importance of personal connections and how to foster and sustain these over the life course. But on both the inclusion and citizenship fronts it remains clear there is much still to be done.

Bach's (2017) thoughtful article outlined some of the key challenges and, more critically, the fundamental questions that we must confront to resist the positioning of people with intellectual disabilities as “cognitive foreigners”. In his article we can also see the linkage between the notions of citizenship and inclusion: how community is both a protection against exclusion and a means to achieve the formal recognitions of citizenship. Duffy (2017) also addressed these broader questions of citizenship and considered the ways in which citizenship, as a primary goal of social policy, can contribute to the full inclusion of people with intellectual disabilities. He noted that “a community of citizens is not organised around narrow measures of human value; instead, it enables multiple forms of human value to be expressed” (p. 26). Here again we see this subtle interplay between the ideas of citizenship and inclusion, how they are mutually reinforcing and form a vital complementarity.

Johannes et al. (2017) have offered an important reminder of the critical role of hearing the authentic voice of people with intellectual disabilities, particularly in evaluating the progress we have made towards inclusion. They have provided a sober reminder that the formal progress of citizenship has not always resulted in a similar progress in inclusion when considered from the perspective of those with intellectual disabilities. This again points to the need to pay close attention to both citizenship and inclusion and how they interact, or not.

Woudzia (2017) takes us closer to the “ground” and the world of practice in examining how we can (and must) adjust our practice to conform with the goals of citizenship. In this case, taking the core citizenship right to make one's own decisions aided by supported decision-making as articulated in article 12 of the UNCRPD (the formal expression of rights) and applying the tools of positive psychology to bring this right closer to lived reality of individuals with intellectual disability.

Finally, in Espiner and Hartnett (2017) we again see this interaction between formal citizenship and inclusion. The complete redevelopment of both law and policy away from a paternalistic model to one based on self-determination, choice, relationship, and community provided the formal platform for change. The program described in this article then moved that formal framework into the realm of inclusion and community by building a support model based on the individual plans of the young people involved and conscious attention to relationship and community. Together they provided a platform for valued inclusion which, as Bach (2017) and Duffy (2017) have noted, will enhance the recognition and progress of citizenship for people with intellectual disabilities.

Taken together, these five articles have demonstrated the breadth and complexity of moving towards full citizenship and inclusion for people with intellectual disabilities. More critically, they have demonstrated the importance of attending to both the formal structures of citizenship and the complex, messy, and ultimately more meaningful world of inclusion. In moving forward we must remember that formal citizenship without inclusion is cold and isolated; inclusion without citizenship is a vulnerable and precarious personhood. As these articles have shown us, a positive future of full citizenship depends on both.

Notes

1. https://www.ndis.gov.au/