Overview

Feature Issue on Transition in a Global Context for People with Intellectual, Developmental, and Other Disabilities

The Meaning of Life: Active Citizenship as a Critical Transition Goal

Author

Jan Šiška is an associate professor at Charles University and University of West Bohemia, Czech Republic, and a Fulbright research scholar at the Institute on Community Integration at the University of Minnesota in Minneapolis. He may be reached at jan.siska@pedf.cuni.cz.

Having a paid job is one of the first things people think about as a marker of successful transition from secondary school to adult life. It should not be the only marker of success as an adult, however. Being a successful adult includes being an active citizen, but not much research has been done to understand exactly what this means and the best ways to support it.

Being a citizen is about having rights, and knowing how to use them. It includes feeling like you belong in the community, having your rights protected, and actively participating in the life of the community. Active citizenship can mean voting and participating in elections, volunteering in community groups, or simply getting together with friends and attending community events. Although most countries do not mean to leave people with disabilities out, there are still challenges to becoming included and respected in society.

Transition age is an important time to prepare students to become active citizens. It includes learning how being a citizen provides security and protection against risks. It also means having autonomy, or being free to make your own decisions and live the kind of life you want to have.

A woman with blonde hair in a loose bun rests her elbow on a table as she listens to a man wearing jeans, a dark jacket, and a wide-brimmed hat

Transition includes relationships and participating in the wider community.

Current research and practice suggest that support provided to young individuals with intellectual and developmental disabilities (IDD) during their transition from education to adulthood is primarily associated with a paid job as an ultimate goal. Overall, training programs, transition planning, career guidance, and other instruments are heavily grounded in traditional markers of adulthood, such as securing work and financial independence. Employment is important for many people with disabilities, but it is not the only goal of transition, and emphasizing it to the exclusion of other pursuits can be limiting or even problematic. It can be particularly damaging to young people with disabilities, many of whom face additional and substantial obstacles to attaining paid work. Little is known about the impact of transition services that are not work related. In addition, research on transitions has largely ignored the views of younger people with disabilities and those with complex support needs, other than when describing inequalities in employment (Jacobs et al., 2018). Adding active citizenship as a critical, person-centered component of the transition framework would add a critical dimension to the transition process. The life course of people with IDD often contains periods when they are not at work or in school, and this presents an opportune moment to focus on participation in a community’s political process, leisure activities, volunteering, and other pursuits of interest to each individual. Smith (2019) calls this a complexity approach, requiring examination of transition as a non-linear life event that is broader than employment.

What is citizenship?

Citizenship might seem to be as straightforward as having a passport. An extensive body of literature, however, suggests the concept of citizenship comprises numerous unanswered questions and challenges that create ambiguity about what citizenship is intended to mean. Citizenship is often associated with a status of a person in society, in which the person is entitled to legal rights. It means that not all people are citizens. Citizenship involves, for example, the right to live in a country, and to work there. It also may include other rights and duties, procedures for participation, benefits, and a feeling of identity and belonging. Although citizenship is regarded by many as culture specific, it always conveys a component of exclusion as well.

Scholars distinguish three components of citizenship: feeling of belonging to the community, protection by the community, and active participation in the community (Smirnov-Brkíc et al, 2010). These components have contributed to developing national citizenship with crossnational disparities. However, as history shows, there have been practices leading to exclusions of entitlement to citizenship on grounds of disability. Although exclusions on entitlement to citizenship on grounds of disability are not used in most countries, it is important to understand the challenges connected to ensuring social inclusion, social cohesion, and respect for human dignity.

How is transition linked to active citizenship?

Citizenship and active citizenship are frequently spelled out in international documents related to education. For example, the fourth goal of the United Nations’ Global Development Goals calls for ensuring that by 2030, all learners will have the knowledge and skills needed to promote global citizenship. What are the knowledge and skills which should be acquired? To answer this question, it appears helpful to examine active citizenship. In most social systems, there are three basic principles associated with active citizenship, as perceived by the individual: security, autonomy, and influence.

Security is related to reducing uncertainties about the future and enjoying social protection against major risks, such as illness, poverty, and violence. Different countries have different arrangements for providing for and protecting their citizens against risks. Some countries have in diverse ways granted a greater role to individual or family responsibility in risk protection than other countries. The last two decades have witnessed a shift in the security dimension across many countries. Governments are relying on citizens to take on more active responsibilities in ensuring their own well-being and protecting themselves against a range of risks. This security principal appears widely present in the existing transitions planning process, with “successful transition” equating to employment and financial independence.

The second principal of active citizenship is autonomy. It rejects dependence on others and promotes living independently, exercising freedom, and living the life one wishes to live. Several developments in policies have led to improvements in the circumstances for exercising autonomy and self-determination in everyday life. Most notably, the closure of large institutions resulted in the growth of community living made possible through personal care and support, accessible physical environments, transportation, and new technologies. It is evident that living in the community as opposed to a congregate-care establishment is a crucial part of being an active citizen. Being a part of society, physically as well as conceptually, is critical to being able to actively participate and to being seen by others as part of that society (Šiška et al., 2017). Viewing autonomy from the transition perspective, it is important to focus not just on housing and support for daily life, but on developing the willingness and capacity of communities to support people with disabilities to achieve active participation, self-determination, and enjoyment.

Influence is related to participating in public deliberation and decision-making processes to set the framework for one’s own life and contribute to the interdependence necessary for the common good. The transition to adulthood in the context of influence is particularly critical for youth with disabilities, as they experience more severe barriers to becoming active citizens, including lack of access to information and stereotypes about the capacity and skills of persons with disabilities (Šiška et al, 2022). To an even greater extent than typical peers, youth with disabilities must make active choices about who they want to be, how they are to realize their aspirations, and how to contribute to or involve themselves in society. Confronted with prevailing attitudes about the normal life course, with expectations about when important life events should take place, youth with disabilities have to make active choices. Dominant expectations about the normal life course have included expectations about what people ought to achieve in life, such as employment and economic self-sufficiency. Youth with disabilities are often forced to develop new and innovative ways of coping and organising their lives. Anecdotal evidence suggests they have to consider in which activities they want to involve themselves, and this often conflicts with parents’ assessment of aptitude and available resources, as well as outside social and attitudinal barriers. Transition planning in the realm of influence should be a process of tailoring activities to meet the needs and expectations of individuals, rather than placing responsibility for achieving goals in the hands of individuals.

Innovation needed

Little attention is being given to transition planning that would go beyond employment, independent living, and postsecondary education. Leisure, relationships, caring for others, volunteering, voting, and other political activity are all essential components of contributing to society. The prevailing dependence on congregate and narrowly understood transition programmes for young people with IDD indicates that innovation is necessary to enable more young people with IDD to experience active participation in society. Given the extensive disadvantage experienced by young people with IDD in all aspects of their lives, active citizenship based on security, autonomy, and influence creates a valuable framework for deconstructing the current models of transition support programmes and strategies and for broadening opportunities across the lifespan. ν

References

Jacobs, P., MacMahon, K., & Quayle, E. (2018). Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis. Journal of Applied Research in Intellectual Disabilities, 31(6), 962–982. https://doi.org/10.1111/jar.12466

Smith, L., & Dowse, L. (2019). Times during transition for young people with complex support needs: entangled critical moments, static liminal periods and contingent meaning making times. Journal of Youth Studies, 22(10), 1327–1344. https://doi.org/10.1080/13676261.2019.1575346

Šiška J., Beadle-Brown J., Káňová, Š. & Tossebro, J. (2017). Active Citizenship through community living. A multi-level perspective. In Rune, H., Bjørn, H., Jerome, B., Delia, F., Ana, M., & Guillén, R. (Eds.). The Changing Disability Policy System. (1st ed.). Routledge.

Šiška, J., Beadle-Brown, J. Káňová, Š. (2022). Mapping frameworks and approaches to measuring the quality of transition support services for young people with intellectual and developmental disabilities. [Manuscript submitted for publication]. Faculty of Education, University of West Bohemia in Pilsen.

SmirnovBrkíc, A., Christopoulos, M., Karakosta, K., Martinez Bermejo, S., Reboton, J. (2010). Milestones in the Development of the Concept of Citizenship. In Isaacs, A. (Ed.), Citizenships and identities: Inclusion, exclusion, participation. Plus-Pisa University Press.

UN General Assembly, Transforming our world: the 2030 Agenda for Sustainable Development, 21 October 2015, A/RES/70/1. https://www.refworld.org/docid/57b6e3e44.html