Including Voices: Volume 23

In this chapter, I assert that the material, gesturing, dancing voices of people labelled as disabled, and that the aesthetic languages developed by these people and their voicings on both the sonic and haptic planes, constructively challenge us to consider the inclusion and integration of these voices into educational environments and cultural discourse in new ways. They motivate us to question not only who, indeed, gets heard in social space but also what kinds of utterances, and by extension, what kinds of bodily configurations and touch qualities, wider society considers to ‘matter’, and beyond this, to celebrate as being ‘beautiful’. To do so, I draw from an experience developing vocal artwork with adults with mild to moderate learning disability in Cork, Ireland. Given that most of us project large and often deeply prejudicial identities and suppositions onto the voices we hear (Bonenfant, 2018c), the chapter shows how the incredibly interesting utterances produced by groups involved in developing the resulting Loop Love project throw up delightful new educational territories for adventurous artists to explore while also deeply challenging our assumptions about how ‘teaching’ should work.

In India, the population of persons with disabilities is estimated as 26.8 million of whom 15.7 million are in the age range 15–59 years (Census 2011). This has proved to be a challenge to the right to education, particularly when there is a situation of poverty and gender-specific issues, which along with disability, lead to further marginalisation. The study reported investigated factors that enabled and/or inhibited progress in the lives of people with disabilities who are doubly disadvantaged. The authors focused on the lived experiences of 14 persons with disabilities and collected data from them using semi-structured interviews. Interview responses were transcribed and coded and validated before grouping into themes of facilitators, inhibitors and opportunities for a better future. The results revealed that family support, support from members in the community and the confidence of persons with disability on their own capabilities were enabling factors. Lack of public awareness, poor facilities for continuing education, untrained teachers, lack of accessible environment and resources, the trauma of having to prove themselves to gain acceptance were inhibitors of their progress. Caregivers of persons with intellectual and developmental disabilities expressed concern for their child's future. Poverty, living in remote areas and/or being a female formed further obstacles to accessing higher education and employment.

Research regarding life in rural coastal communities in England has been limited, while the experience of families further marginalised by disability has been unresearched. To address this topic, a qualitative study was undertaken to explore the lives of families living with autism in rural coastal England. Twenty-two families from Cornwall and West Norfolk were interviewed in early 2019, including young people on the autism spectrum, their siblings, parents (some of whom were themselves also on the spectrum) and grandparents.

Perceived benefits of living in a rural coastal space were identified. These included the location, the sense of community and the sense of ‘going back in time’ as a positive experience. However, families also spoke of barriers and challenges associated with negative aspects of the location, the experience of stigma and intersectionality in relation to autism and rural coastal spaces. Difficulties concerning education, health and social care support were worsened by poor local infrastructure and the impact of a decade of austerity.

The qualitative methodology involving collaboration with families with autism in developing the research tools, participant recruitment and stakeholder validation is considered.

This research explored the intersecting impacts of rurality, coastality and disability to provide a novel and more nuanced understanding of such families' experiences. As such, it contributes to our understanding of those living ‘on the edge’ – regarding physical location, societal and educational marginalisation.

This chapter reports a study of education for first generation learners in Maharashtra, India. The research investigated issues of access and the quality of education provided. This was informed by the Capability Approach (Sen, 1993), which was applied to discuss data obtained through this investigation. The study interrogates approaches to promoting education for all; in particular, the methods adopted to meet the needs of first generation learners. Sen's theory when used in an educational setting enables us to look beyond the economic value of education and also beyond education as a human right (Unterhalter & Brighouse, 2007). The main aim of this study was to investigate educational opportunities and the influence of socio-economic factors from the perspectives of children and their parents.

The development of inclusive education, characterised by both universal momentum and geopolitical differences, has largely omitted children and young people with profound intellectual and multiple disabilities. For this group, access to educational opportunities at all has been slow to be won, and separation for ‘special care’ for their very high support needs is the norm. There have been advances in recognising the human rights and indeed humanity of people with the most profound intellectual disabilities, but the focus of educationalists has often been on how to foster and document fine-grained learning gains and on the specialist nature of the teaching they need. In this chapter, in contrast, the emphasis is on how the spirit of ‘Nothing about us without us’ can extend to children and young people with profound intellectual disabilities such that they are at the heart rather than periphery of the education and research process. The potential for belonging in education and research is illustrated through exploratory work on doing research inclusively with children with profound intellectual and multiple disabilities in two English special school classes. The starting point is seeking to know them from being with them in a particular way. The knowledge shared in the chapter is a mix of big picture state of the art overview and deep intersubjective knowledge/feeling created together with children with profound intellectual and multiple disabilities. The implications for future research in inclusion include the need to start from a different mindset in which belonging and reciprocity inform an asset-based approach.

The number of disabled students participating in higher education (HE) and availing support services has increased 268% from the years of 2008/2009 to 2021. Disabled students face a range of transitional barriers that their non-disabled peers do not, including ableist attitudes, and inaccessible environments. The PhD research upon which this chapter is based investigated the social engagement experiences of disabled students in HE. It examined qualitative data from 65 participants, with representatives from 19 HE institutions (HEIs) across Ireland using a four-phased, sequential and concurrent qualitative data collection methodology. This chapter will focus on one phase of this PhD research design, namely phase one, which captured the voice of disabled undergraduate students (n = 23). The research identified that disabled students value social engagement, but barriers impact upon students' social engagement, having their voice heard, their ability to form connections, affecting students' sense of belonging. Based on my PhD findings and my work to implement them, I would argue that ‘consultation’ with disabled students is currently taking place in its most basic form. HE needs to embrace the disruptive potential of disabled people and move from passive to active listening, from meaningless consultation to meaningful consultation and then to collaboration and partnership.

The transgender or Hijra community as they are called in India is one of the most marginalised communities within the country. The caste system which forms the fabric of an Indian mind set divides people into social hierarchies and a child born to a particular caste assumes this as their identity. This social stratification leads to exploitation of lower castes by those belonging to higher castes. The prejudices of various kinds that continue to exist make the life of the underprivileged and the marginalised extremely difficult. Disha, the focus of this chapter, represents one such community which has faced tremendous discrimination and has been denied basic fundamental rights of education and empowerment. Breaking the heterosexual patriarchy was not easy for her, yet she conquered her own demons and societal pressures and is today comfortable in her own sexual identity and is a spokesperson for fellow members of the transgender community. Through her story, this chapter elucidates an understanding of the challenges faced by transgender people in India. A semi-structured interview with Disha was conducted after taking her consent. She felt this would help sensitise the society and also inspire other transgender persons to discuss their experiences. The data collected from the interview enabled the author to identify the themes around which a discourse on this marginalised community could be encouraged. In conclusion, the author suggests a way forward to achieve protection and rehabilitation of transgender community.

In this chapter, we report on the perspectives of marginalised voices of disabled children and young people (CYP) in the Palestinian territories of the West Bank. The conflict has contributed to many of the barriers preventing the rights of children to a quality education, such as the lack of schools, schools in a poor state of repair, attacks and the threat of attacks on schools, teachers and students. The research questions focused on the extent to which the children felt they belonged in their school or community and whether they were included in the design of their curriculum. Eight focus groups with CYP using a variety of participatory research methods were used to elicit their views on inclusion and their lives under occupation. The findings reveal that CYP are rarely involved in decisions about their education. Using participatory action research (PAR), we learnt that CYP with disabilities can provide intelligent and astute insights into their lived experiences, and that meaningful learning can occur if creative approaches to teaching and learning are adopted. To remain true to the emancipatory, egalitarian and democratic principles of PAR, the needs of the research participants should guide the research design, create maximum opportunities for participants to take part in data collection and decide on actions to create change.

The United National Convention on the Rights of Persons with Disabilities (UNCRPD) emphasises the need for those with disabilities to be guaranteed full access to participation in society (United Nations, 2006). This rights-based approach in higher education foregrounds the importance of removing practical and attitudinal barriers within how institutions, or staff, interact with students with traumatic brain injury (TBI) that facilitate their access. This chapter summarises the key findings of my PhD thesis where I use my unique positioning as a TBI survivor and status as a PhD student to gain deeper understanding of the experience of access for neurodiverse students in higher education. I contend that we can be marginalised in these settings. In this chapter, I argue for the importance of student voice in decision and policymaking processes in higher education, aligning with ‘nothing about us, without us’ (Charlton, 2000). A blended methodology of autoethnography and phenomenology was used in my scholarship, which meant listening to the perspectives of students with TBI who often navigate the educational environment differently. Loss, change of identity and care are significant factors in shaping experiences. This research has much to offer as it uses the researcher's and participant's voices to transform rather than maintain the status quo regarding access for students with TBI. Inclusive education must place flexibility and diversity at its core and consider the person when putting academic programmes and support in place.

Researchers play an essential, and indeed powerful, role in honouring and empowering the voices of people from marginalised communities. This chapter seeks to step beyond the already comprehensive ethical and methodological literature on ‘doing’ research by offering a reflection on the less articulated, but no less substantiative, aspects of conducting qualitative research with those for whom that which is most important, as the writer Audrey Lorde suggests, must be spoken. The delicate dance of interest and objectivity, a tolerance of not knowing and uncertainty and the willingness to hold competing truths with equal reverence are discussed and illuminated with examples from my own research with young people with experiences of mental health difficulties. This chapter is offered with the intention of foregrounding some of the more tacit, but no less bruising, aspects of the research interplay. Equally, it is offered in the hope that, in bringing into the open our limitations and vulnerabilities as researchers, we might be better positioned to understand, indeed honour, that which is most important for those in distress.

There has been a paradigm shift within research exploring autistic experience in recent decades towards greater participation, agency and voice for autistic researchers and the autistic community more generally (Fletcher-Watson et al., 2019). This approach has shown a greater focus on research oriented towards the priorities or preferences of the autistic community (Fletcher-Watson & Happé, 2019; Pellicano et al., 2014), curtails concerns regarding epistemic injustice and has influenced understandings of autistic ontology and neurology. Co-produced research, characterised by the inclusion of diverse stakeholders, builds trust between participants. Nonetheless, co-production in research requires careful planning and support (Stark et al., 2021), sometimes proving ‘turbulent’ and ‘challenging’ (Worsley et al., 2021). This chapter explores the experiences and reflections of a team of autistic and non-autistic researchers conducting co-produced research amid the global COVID-19 pandemic. With research practices and systems altered due to increased remote work, online communication and limited in-person interaction, this topic is especially pertinent. With the increasing emphasis on involving members of the autistic community in research at all levels of development, the impact of the pandemic on how participatory research is carried out may be complex. This chapter has implications for planning and conducting co-produced research in our new reality, considering both the opportunities and obstacles it presents.

There is a paucity of empirical research on poetry pedagogy within inclusive higher/post-secondary education programmes for students with intellectual disabilities. This chapter goes some way to address this omission by presenting an investigation of poetry pedagogy as informed by university students of the Trinity Centre for People with Intellectual Disabilities (TCPID), School of Education, Trinity College Dublin. By asking the question: How can university students with intellectual disabilities be supported to respond to poetry? two themes were identified in the findings: ‘Curriculum content’ identified the importance of providing background information on the poet and selecting poems that directly relate to their life experience. The second theme ‘Pedagogical approaches’ examined how the utilisation of a variety of teaching and learning strategies, informed by a Universal Design for Learning (UDL) approach, can be successfully used to develop Arts, Science and Inclusive Applied Practice (ASIAP) students' interpretations of poems.

This chapter describes experiences of inclusion from the perspective of young adults with Down syndrome, participating in an intensive education to work (EtW) training programme. The programme, designed by a non-governmental organisation (NGO), was conducted within a private university in Australia working in partnership with the NGO.

Drawing from a broader formative evaluation of the programme, the case study investigated how inclusion was described and understood by the student participants and individuals involved in facilitating or supporting the programme. Data collection involved conducting a focus group interview with student participants and face-to-face interviews with their teachers, a student volunteer and two university lecturers who interacted with students in the programme. The findings have been used to improve the processes of the programme currently undergoing its third iteration.

Findings suggest the need to consider at least two levels of provision in the development of equitable education for individuals participating in this programme. These include considering their voices at the level of programme design, and secondly, deliberately facilitating disability confidence programs for university students and staff.

The study notes that embedding education to employment training programs for individuals with intellectual disabilities within university settings provide them with opportunities to experience and access higher education; however, more investigations are needed to ascertain what equitable higher education in practice means for them.

Diversifying the teaching profession has been of international concern for several decades. While most attention has been devoted to issues of ‘race’ and ethnicity, in comparison, social class has been relatively invisible. Research suggests that those from working class backgrounds experience challenges with regard to belonging in what has been regarded as a middle class teaching profession. An area unexplored has been the complexities of researching with student teachers from under-represented groups, including those from working class backgrounds. This chapter draws on research conducted as part of the Access to Post-primary Teaching (APT) project funded under the Higher Education Authority's Programme for Access to Higher Education (PATH): Strand 1 – Equity of Access to Initial Teacher Education. APT supports the participation of student teachers from lower socio-economic groups in initial teacher education. Following the introduction and literature review, we provide information about the methodology of the overall project, as well as the data upon which we draw in this chapter. Next, we present a critical reflective analysis of working with APT participants over the last six years, drawing on our own critical reflections as researchers, as well as the voices of our participants through the project's research strand. Here we highlight concerns pertaining to relative researcher-participant positionality, and issues of identity and disclosure. Finally, we interrogate our analysis using the methodological literature about researching with marginalised groups and end with recommendations for supporting researcher reflexivity.

In 2008, the United States passed the Higher Education Opportunity ACT (Public Law 110-315). The goal of this legislation was to increase the participation of individuals with intellectual disabilities in post-secondary education (PSE) programmes and improve the abysmal (14%) employment rate among this population. To help start PSE programmes on college campuses, many universities waived their normal enrolment requirements and established unique entrance prerequisites for these specialised programmes to increase inclusive participation. Today, there are 318 PSE programmes located across 49 of the 50 United States. Utilising a qualitative design, researchers conducted semi-focused interviews with 13 recent PSE graduates to give voice to this marginalised group of students. Researchers examined graduates' perceptions of the benefits and shortcomings of their college experiences and how the programme prepared them for life after college. Using thematic and deductive analysis, 14 themes and 3 subthemes were identified. Implications of these findings for research and practice are discussed.

Research on Traveller education in Ireland is limited. Internationally, studies on the education of the Traveller, Roma or Gypsy community tend to focus on educational participation and exclusion, discrimination, identity and belonging with little focus on the representation of Traveller student across different types of schools and educational settings. This chapter examines the distribution of Traveller students across mainstream and alternative education settings in Ireland, and how this distribution varies across different types of schools and centres. Using data from the Growing Up in Ireland principal survey and survey data from Irish alternative education providers (The National Youthreach Programme), it explores the concentration of Travellers in mainstream provision, in designated disadvantaged schools (Delivering Equality of Opportunity in Schools [DEIS]) compared to non-DEIS schools, and alternative education in Ireland. Findings show a higher representation of Traveller students in schools designated disadvantaged compared to non-disadvantaged settings and greater numbers of Traveller students in large primary and, to a lesser extent, secondary schools. The findings for alternative education show that Traveller young people make up 15% of learners which is higher than their representation in the general population or the school system. There is marked regional variation with higher representation of Travellers in alternative education settings in the West of Ireland compared to other regions.

With increasing policy emphasis on inclusive education and the need to increase retention of students from Traveller backgrounds, it is perhaps an opportune time to explore the distribution of Traveller students across different school and alternative educational contexts so that educational supports can be targeted more effectively.

In this chapter, we discuss the merits and challenges of organic communication within an inclusive, iterative research design through our research project ‘Improving the quality of life of families with parents with intellectual disabilities (IDs) and their children (<12 years) by means of assistive robotics’. We will discuss the research process, its key steps and preliminary findings, as well as how inclusivity of participants was taken along throughout this process. The links between research design, designers and project participants are explored and reflected on. Our positions as researchers within the research process are also reflected upon. We will additionally address the implications of our research for the broader field of inclusive design for assistive robotics and the creative methodologies employed and tailored to the needs of families headed by parents with an ID and their children. In this, we keep a close eye on the difficulties such families face within the context of our research project. Lastly, we reflect on several key markers of collaboration within marginalised communities we encountered in our research.