Session Information
04 SES 01 A, Agency and Support Across the Life Span
Paper Session
Contribution
Contemporary discussions of intellectual disability increasingly challenge medicalised, deficit-based frames in favour of social, cultural, and ethical accounts (Shakespeare, 2016). The terminological shift from “mental retardation” to “intellectual disability” is indicative of socio-political change, situating disability within relationships, institutions, and value systems rather than focusing on impairment alone (Schalock et al., 2007; Salvador-Carulla et al., 2011). The social model redirected attention to environmental and structural barriers (Oliver, 1990), yet critiques note that embodied and relational experiences can remain less visible within policy and practice (Shakespeare, 2004, 2015). Accordingly, Critical Disability Studies links disability to power, identity, and ethics within struggles for social justice (Goodley, 2013; Goodley et al., 2021), while the affirmation model frames disability as meaningful identity and inclusion as cultural transformation amid persistent exclusionary pressures in schools (Swain & French, 2000; Connor, 2024).
Privacy becomes an ethically charged dimension of inclusive education as support extends into ICT-mediated spaces. International human rights frameworks position privacy as fundamental to autonomy, dignity, and self-determination (United Nations, 2006; OECD, 2022). For young people with intellectual disabilities, privacy is entangled with sexuality, participation, and schooling, yet dominant discourses may frame their sexuality as risky or inappropriate, legitimising surveillance and restriction in the name of protection while potentially narrowing agency (Shakespeare et al., 1996; Caffo, 2021).
Foucault’s analyses of power, governmentality, and biopolitics illuminate how privacy can operate as a field of governance and not only the personal right of humanist discourses (Foucault, 1977, 1978); protective discourses produce norms of “appropriate” behaviour and marginalise alternative embodiments and desires. Deleuze’s (1994) philosophy of difference challenges such normalising logics by treating difference as generative and relational. Through assemblage, privacy can be understood as continuously produced across relations among young people, families, educational institutions, and digital technologies (Deleuze & Guattari, 1980; DeLanda, 2006).
Digital environments intensify these dynamics by expanding opportunities for belonging while exposing young people with intellectual disabilities to risks including exploitation, surveillance, and boundary violations. Evidence suggests that overprotective responses may also lead to exclusion and reduced participation (Chadwick, 2022). Educational discourses, particularly Relationships and Sexuality Education (RSE), sit at the centre of this balance; yet RSE appears inconsistently implemented for students with special educational needs and often prioritises risk management over autonomy, participation, and ethical reflection (Dring-Turner, 2019; McCann et al., 2018). The purpose of the presented study is to explore the perspectives of parents, teachers, and students regarding the online privacy and security needs of young people with intellectual disabilities aged 14–19 in England. The research aims to answer the following questions:
- What are the perspectives of teachers and parents regarding the online privacy and security needs of young people with intellectual disabilities?
- What information sources do parents and teachers use regarding online privacy and security, and what are their opinions about the reliability of these sources?
- What are parents' perceptions of the risks their children may face in online environments, and what measures do they take to address these risks?
- How are teachers involved in designing educational programmes that address online privacy and security?
- What are teachers' perspectives on the inclusion of online privacy and security issues in the Relationships and Sexuality Education (RSE) curriculum?
- To what extent do current educational programmes meet the online privacy and security needs of young people with intellectual disabilities?
Findings will inform discussion of the gaps and enabling conditions through which online privacy and security are assembled within RSE, supporting rights-based inclusive practice in European and wider international policy and practice debates.
Method
A pragmatic mixed-methods design was employed within an instrumental case study at a single site (Kuhn, 1962; Creswell & Plano Clark, 2018; Stake, 1995; Yin, 2018). Criterion-based sampling (Cohen, Manion, & Morrison, 2018; Patton, 2015) was applied and participants included 30+ parents, 8–12 teachers, and students aged 14–19 with intellectual disabilities in two observed classrooms, alongside IEPs for participating students. Sampling criteria required parents having a child (14–19) diagnosed with intellectual disability, teachers teaching students (14–19) diagnosed with intellectual disability, and participation proceeded through voluntary adult consent, and parental consent plus student assent for student observations (Cohen et al., 2018). Data was generated through a parent survey administered via JISC online to capture perceived online privacy and security needs, risk perceptions, and supervision practices, allowing descriptive and correlational analysis (Fowler, 2008; Creswell & Creswell, 2017). Semi-structured interviews with teachers examined how online privacy and security is conceptualised and addressed through school practices and curriculum, while remaining sufficiently flexible to follow participants’ accounts (Lincoln & Guba, 1985; Cohen et al., 2018). Participant observation with students during RSE-related lessons documented naturally occurring interactions and meaning-making around privacy, safety, and boundaries (Hammersley & Atkinson, 2019; Lincoln & Guba, 1985). IEP document analysis was used to contextualise and triangulate reported and observed practices within formal educational planning (Bowen, 2009; Prior, 2003). A four-stage pilot enabled the refining of instruments and procedures (two hours of observation, one IEP review, one teacher interview, and feedback from two parents on the online questionnaire) (Bell & Waters, 2018; Yin, 2018). Survey content validity was supported through expert review and CVI procedures (Polit & Beck, 2006), and internal consistency was examined using Cronbach’s alpha in SPSS (Tavakol & Dennick, 2011). Qualitative trustworthiness was strengthened through methodological triangulation, detailed field notes and an audit trail, prolonged engagement and persistent observation, thick description, and intercoder agreement on 30% of transcripts (Denzin, 1978; Lincoln & Guba, 1985; Miles & Huberman, 1994; Hammersley & Atkinson, 2019; Bowen, 2009). All procedures align with BERA ethical guidelines (BERA, 2024). Data collection took place in a school in southwest England, selected due to established collaboration and the school’s implementation of a So SAFE! Programme which aligned closely with the study focus (Creswell & Poth, 2018; Fisher, Bauer, & Richards, 2016; Richards, Fisher, & Dyer, 2019).
Expected Outcomes
This study is expected to generate a nuanced account of how online privacy and security are understood and enacted around young people with intellectual disabilities in a contemporary school context, and how “protection” may be experienced as both enabling and limiting for participation and agency (Shakespeare et al., 1996; Chadwick, 2022; Caffo, 2021). Bringing together parent survey responses, teacher interviews, student-focused participant observation, and IEP document analysis, the findings are anticipated to illuminate convergences and tensions between home and school priorities, including how risk perceptions shape everyday digital boundaries and supervision practices (Bowen, 2009; Hammersley & Atkinson, 2019). In line with Critical Disability Studies and the affirmation model, the study may point to moments where privacy is negotiated as a relational and ethical practice, not a purely technical issue, while also showing how institutional routines can reproduce exclusionary pressures within inclusive education (Goodley, 2013; Swain & French, 2000; Connor, 2024). Theoretically, the analysis will contribute to understanding privacy as a site of governance and subject formation, where safeguarding discourses can normalise particular forms of “appropriate” digital behaviour (Foucault, 1977, 1978), and where privacy is assembled through the shifting relations among students, families, school practices, and technologies (Deleuze & Guattari, 1980; DeLanda, 2006). Practically, the study is likely to identify gaps between policy intentions and enacted provision, particularly regarding how online privacy and security are addressed within RSE for students with special educational needs (DfE, 2019; Dring-Turner, 2019; McCann et al., 2018). These outcomes may inform more context-sensitive, rights-based approaches to digital safety education that balance protection with participation, and they will be of relevance to wider European and international debates on inclusion, children’s rights, and privacy in digital learning environments (United Nations, 2006; OECD, 2022).
References
British Educational Research Association (BERA). (2024). Ethical guidelines for educational research (5th ed.). London: BERA. Cohen, L., Manion, L., & Morrison, K. (2018). Research methods in education (8th ed.). Routledge. Foucault, M. (1977). Discipline and Punish: The Birth of the Prison. Pantheon Books: New York Foucault, M. (1978). The history of sexuality, Volume I: An introduction. Pantheon Books: New York. Goodley, D. (2013). Dis/entangling critical disability studies. Disability & Society, 28(5), 631 644. Goodley, D., Lawthom, R., Liddiard, K., & Runswick-Cole, K. (2021). Key concerns for critical disability studies. International Journal of Disability and Social Justice, 1(1), 5–25. Hammersley, M., & Atkinson, P. (2019). Ethnography: Principles in practice (4th ed.). Routledge. Miles, M. B., & Huberman, M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Thousand Oaks, CA: Sage Publications. Shakespeare, T. (2004). Social models of disability and other life strategies. Scandinavian Journal of Disability Research, 6(1), 8–21. Swain, J., & French, S. (2000). Towards an affirmation model of disability. Disability & Society, 15(4), 569–582.
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