Immersing in accessibility: Co-creating a pedagogy that is effective, educational – and legal

This paper examines pedagogy and immersion through the lens of accessibility via a discussion of a semester-long life- writing class for postgraduate students. One student – a former General Practitioner – is profoundly deaf and blind through a degenerative disease. The paper discusses the following aspects: immersive, regarding the legalities and technological needs of accessibility within a tertiary environment; pedagogic, in creating an equitable classroom space for every student; and cultural, surrounding the rights of people living with disability and seeking to learn. Within the qualitative framework of narrative inquiry, an academic-lecturer and a student individually devised a set of questions and rigorously investigated how the other regarded the pedagogy undertaken: its strengths and weaknesses, mistakes made, lessons learned and humorous moments. By articulating and reflecting upon this classroom space, we contribute to the scant canon of accessibility and education narratives, framed by the strengthening legal structures devised to make all welcome in tertiary institutions.

Key words: accessibility, disability, deafblindness, immersion, life-writing, pedagogy

Introduction

As a society we should be in a position to ensure that a person who needs full time communications assistance gets it (Ozdowski 2002).

This paper aims to augment the scarce scholarship discussing higher educational accessibility and inclusion experiences of students with deafblindness. In Australia, higher education institutions are obliged by legal and moral frameworks to provide equitable and supported education to people with disabilities. These frameworks include the Anti-Discrimination Act 1977 (NSW) and Australian Disability Services Act 1986 (Cth), as well as the United Nations Convention on the Rights of People with Disabilities (2008). Dr Sev Ozdowski asserts that equitable access to communication is a fundamental human right:

Equitable access to communication is essential if people with deafblindness are to have any prospect of equality of opportunity and access in education, employment, access to citizenship rights including voting, access to services such as health care or transport; and other areas of social and economic participation ... it is one thing to declare human rights in theory. It is another to achieve them in practice ... The Disability Discrimination Act ... is one tool for working towards equality for people with disabilities. ... It makes discrimination unlawful in employment, education, provision of goods and services among other areas (Ozdowski 2002 pars 23-29).

Yet, 20 years on from Ozdowski’s comments, students with deafblindness at universities remain a rare species.

Providing accessible university learning for individuals with a communication disability is challenging when there is no map of the terrain. For inclusion in higher education (indeed any education) universities must enable students with disability to be valued, supported and respected (Fines-Neuschild 2022). This paper charts the course of a university semester, when a student (Author 1) undertook a subject taught by an academic (Author 2) in the Master of Arts: Creative Writing programme. Author 1 is a ‘first generation’ student at the tertiary institution, which has never had to support such complex access to information, communication and mobility needs.

Establishing clear lines of communication (using whatever form, and these may be multiple that best suits the student) between academic- lecturer and student is critical. Such communication was instrumental in the successful and enjoyable journey of the subject. Safe arrival depends on many things: human assistance, technologies, patience, forbearance, safe spaces and safe people. Engagement in learning cannot happen without teachers prepared to learn as well. This paper lays some topographical details for the next travellers to follow, while also acknowledging that each journey is individual. The position of the deafblind student is complex but, as Arndt notes:

Students who are deafblind are often more limited by the attitudes of others and limitations others impose on them than they are by their hearing loss and visual impairment. They need opportunities to participate in challenging and enriching classes, and they have the right to try new things, to fail, and to try again, just like any other college student (2011: 3).

Standpoint theory provides this paper’s compass; it insists that we can only understand what really happens to students with deafblindness and their teachers/academics in higher education by seeking both the student’s and teacher’s perspectives. These two perspectives of living experiences build knowledge, enable social change and translate this understanding into practice.

The phrase ‘student with deafblindness’ is an overarching term for any student who has a co-occurring sight and hearing loss. The Nordic definition acknowledges deafblindness is a unique and distinct disability:

Deafblindness is a distinct disability. Deafblindness is a combined vision and hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is required to facilitate specific services, environmental alterations and/ or technology (Nordic Centre for Welfare and Social Issues n.d.).

While uncommon among those under 65 years old, it increases in prevalence with age to approximately 25 per cent of those over 85 years (Schneider et al. 2012). Most people with deafblindness are not completely without hearing and sight but have varying degrees of vision and decibels of hearing, making this condition vastly heterogeneous. An exhaustive search has not revealed Australian data on the percentage of Australians with deafblindness at universities. American data relates that only 3.5 per cent of people with deafblindness attend university (Chanock et al. 2010: 5). Everson and Enos (1995) write of students with deafblindness in universities: ‘Their exclusion appears to have less to do with type or severity of disability than with programmatic and personal barriers in educational programs.’

The Nordic definition comes with explanatory notes about the complexity of deafblindness, summarised here:

1. distinct and complex disability

2. hard for each sense to compensate for the other

3. time-consuming

4. energy-draining

5. information received in fragments

6. activity-limiting

7. participation-reducing

8. communication, access to information and mobility affected

9. tactile sense critical as a conduit of information

10. communication technology, assistive devices, interpreters and adaptations to the environment may be required

11. despite the above, human assistance and support is still needed to provide access to information, mobility and safety (Nordic Centre for Welfare and Social Issues n.d.).

Thus, society (and university) is responsible for providing support and programmes to assist people with deafblindness to live flourishing lives. This includes access to life-long learning. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006) recognises deafblindness as a distinct disability. This recognition in international law is bolstered by the term adopted in other jurisdictions (World Federation for the Deafblind 2018). Australia has not accepted deafblindness as a distinct and unique disability unlike the UK and Europe. Hence there is a lack of discrete policies and practices to support awareness and practice, as well as providing directions for universities as to what may be needed to support their students with deafblindness.

Despite the absence of a validated measure, hierarchical ranking, or tool for ‘deafblindness’, the dual sensory impairment of deafblindness is not merely the consequence of adding one impairment to another. As Dammeyer (2014: 555) notes: ‘1 + 1 = 3 ... it is a condition more disabling than the sum of its parts.’ Each individual has different residual senses, language/s, technology use and accessibility needs. The literature acknowledges complexity and illustrates how combining the accessibility supports for deaf and blind students does not aggregate to covering the needs of the deafblind (Spiers and Hammett 1995; WFDB 2018, 2022).

Situating the research

This paper operates on a social relational understanding of disability; that is, that we are disabled by our bodies, minds and society (Shakespeare 2014). This approach also denotes that society holds a collective power that can change disabling attitudes, environments and barriers. Social relational discourse accepts that no model suffices to explicate every disability experience in every person in every culture. Further, a pure social model fails to account for those with complex disabilities, such as deafblindness, and the consequent ‘insurmountable realities (Vehmas and Watson 2014: 642).

This paper utilises a narrative inquiry methodology grounded in standpoint theory: a two-way conversation between the student and academic, seeking the perspectives and experiences of each. Standpoint theory asserts that all knowledge is situated socially, and that power relations shape this knowledge (Paradies 2018); therefore, there is no neutral nor objective position (Rowland et al. 2017). Researchers need to challenge and delimit restrictive research practices, rather than operate from a position of ‘neutrality’. As Paradies writes: ‘Researchers, scholars and other experts no longer have a mandate to stand above and dictate truth and reality to others’ (2018: 125). Rather, researchers must stand with their participants as co-creators of knowledge. Harding (2004: 4) refers to this as letting subjects become ‘the-authors- of-knowledge’. This research co-creates new knowledge by engaging student and pedagogue standpoints via narrative inquiry dialogue, thus sharing research/researcher/subject power. Both the academic and student are conjoint researchers, each interviewing the other while accommodating the accessibility needs of the student-researcher with deafblindness. Traditionally, people with deafblindness have occupied a position of less power in all social domains, including higher education. This remains essentially unexamined.

Standpoint theory instructs researchers to enjoin knowledge production ‘with a process of empowerment’ (Rolin 2009: 220), so they can bring about change, resulting in a more just society. Paradies (2018: 119) calls this process ‘scholar activism’. This research process seeks to inform students and teachers in tertiary institutions, demonstrating how, in their separate roles, they can navigate and mutually benefit from inclusive practices.

There is a general paucity of scholarly work on deafblindness (Dammeyer 2014; Larsen and Damen 2014; Simcock 2017; Jaiswal 2018). Specifically, academic literature is thin. Widespread social exclusion and reduced participation is noted in Jaiswal’s scoping review (2018) and general lack of educational opportunities and inclusion is highlighted by the 2018 and 2023 World Federation of the Deafblind (WFDB) reports. We conducted a scoping review that included the wider social literature sources (Pawson et al. 2006). We identified nine papers, chapters and books pertaining to the lived experiences of students with deafblindness and/or their educators at university or college: (Alexander and Alper 2014; Arndt 2011; Chanock et al. 2010; Chanock et al. 2011; Everson and Enos 1995; Girma 2019a; Stoffel 2012; Watharow 2021a; Wayland and Watharow 2017; Wolsey 2017; Wolsey 2018; Watharow 2021b). The sole criteria was lived experience, that is the author, researcher or participants included verbatim testimonies from university/college students with deafblindness.

We re-canvassed the databases in 2023 to see if there had been any change in the knowledge platform of lived experiences of higher education for students with deafblindness and found one account by Elsa Sjunneson: Being seen: One woman’s fight against ableism (2022). The thin knowledge platform persists. Furthermore, ongoing experiences of exclusion experienced by author 1 since beginning this paper, that has been interrupted by the rigours of Master’s coursework, doctoral programmes and multiple Covid-19 waves, ensures its relevance today. The literature in this area is persistently sparse, thus this work remains true and relevant.

Analysis

These accounts that include lived experience testimonies find that strong academic and learning support leads to success (Alexander and Alpe 2014; Girma 2019a; Chanock et al. 2010; Chanock et al. 2011; Stoffel 2012; Sjunneson 2022, Watharow 2021a). However, Arndt (2011), Stoffel (2012) and Wolsey (2017) also acknowledge that many of the students interviewed experienced widespread exclusion. Sjunneson writes: ‘I was not like the other students’ (2021: 229). Her book describes a life-long battle with ableism not only in higher education but in school, at home and in wider society. This is confirmed by the 2018 and 2022 reports by the WFDB. This matters because barriers in education are inseparable for people with disabilities generally, from barriers in employment and other social domains.

Our research identifies with Chanock et al. (2011), in that academia does not yet offer observations on the mutuality of learning experiences between educators and students. What is readily apparent is that success (obtaining adjustments, accommodations and accessible materials) depends on the ‘kindness’ of individuals rather than the academic institution and culture themselves being inclusive. Danermark and Möller (2008) identify this concept to hold true for people with deafblindness in all arenas depending on the kindness and skills of others for ontological security.

One feature of the few academic papers (Arndt 2011; Chanock et al. 2010, 2011; Wolsey 2017) is the rarity of lived experience in all phases of the research including co-authorship. Chanock et al. (2010) and Chanock (2011) are the sole examples of co-authorship with both student and teacher perspectives. In the wider disability research literature, lived experience is increasingly valued with co-production a gold standard: ‘nothing about us without us’ as the mantra declaims (Charlton 1998).

Critical insights are gained from the available literature, however, in the following areas: planning, access and communication, the imperative role of pedagogical support for students with deafblindness, climates of microaggression (little harms), ableism and discrimination, educating the educators and temporal hurdles.

1. Planning

Many authors explicitly recommend transition planning, and meeting with disability support providers, academics and others before beginning studies (Arndt 2011; Watharow 2021a; Wolsey 2017).

2. Access and communication

Access to information and communication are the nexus for educational success: without systems and support in place, there can be no learning and flourishing. Teamwork and resources are key to providing the accessibility support needed for each individual. Fichten et al. (2016) note that drop-out rates among students with vision impairments are higher when accessibility is not provided or is problematic. For students with deafblindness, Chanock et al. write:

For people who are Deaf-blind (sic) to undertake university study requires the involvement of a wide range of people, including (in addition to their subject lecturers) technicians who provide texts in an accessible form, sign language interpreters, librarians, and, if possible, academic skills advisers to help with composing and editing (2011: 1).

Communication also depends on funding for devices and systems because students may need many. Girma (2019b par. 1) notes: ‘Figuring out law school is gruelling and being deafblind doesn’t make it easier.’ She requires American sign language interpreters, her guide dog Maxine, Braille Note, tactile screen computer, Bluetooth wireless keyboard and FM microphone system with earbuds.

Digital spaces can be problematic for people with disability. Restrepo et al. (2016) outline the widespread lack of accessibility in media platforms. Watharow (2021a) describes difficulties in navigating the digital divide, where the accessibility features on media used for teaching are not provided or do not meet standards. Physical spaces also require adjustments as difficulties with mobility and orientation are commonplace for those with deafblindness alongside accessing information and communication (Nordic definition n.d). Alexander and Alper (2014) describe experiencing catastrophic accidents that can occur (fall out a window). Human support and/or service animal support may be needed to navigate inaccessible buildings and spaces (Watharow 2021b; Girma 2019a).

3. Pedagogy

At universities with legislative and rights frameworks, the compliance of academic and support staff is tightly linked to the success of students with disability. One study cited in Mutanga (2017) describes an institution with a top-down climate of inclusion and commitment to deaf students and education, resulting in high rates of academic success. For students with deafblindness, both Alexander and Alper (2014) and Stoffel (2012) describe poor outcomes (failing courses, distress), but good outcomes (passing subjects, obtaining degrees) when they had engaged and committed pedagogues and disability support staff. Wayland and Watharow (2017) note that supervisors must engage with, not just the supervisee with deafblindness, but also the entire accessibility support network; the supervisor’s and academic’s roles are engaged with advocacy as part of allyship.

The literature provides scant information and limited practical strategies for academics when dealing with students with deafblindness. Lived experience reports, primarily of undergraduates, voice the lack of embedded disability support and few inclusive practices in academia (Arndt 2011; Stoffel 2012; Wolsey 2017). Only Chanock et al. (2010, 2011) describe what teaching staff/pedagogues learn from students with deafblindness, although limited to the role of an academic skills support, not subject/course academics. However, a student with deafblindness is a co-author in Chanock et al. (2011) and Chanock et al. (2010) while in Stoffel (2012) he is both editor and a contributor of lived experiences. No articles enjoin the perspectives of the subject teacher and student in dialogue. The present research is situated in this gap.

4. Micro-aggressions, discrimination and ableism

Emerson et al. (2019) posit that people with disabilities experience three times the discrimination and micro-aggressions of those without. Academia is fundamentally ableist (Mellifont 2019) and thus full of unsafe spaces for people with disability (Dolmage 2017). Alexander and Alper (2014) detail discrimination in which a university fails to provide reasonable adjustments and accommodations, creating poor student experiences, while another university creates positive student experiences by meeting all accessibility needs and providing an interpreter. These inconsistencies are widespread, illegal and delimiting. Arndt (2011), Stoffel (2012) and Wolsey (2017) describe how deafblind students feel excluded at deaf colleges where language (American sign language) is such a visual medium; students with low vision or blindness in addition to their deafness cannot communicate or participate. The importance of touch, such as brailling for Girma’s subjects (2019a) and tactile language for many of Arndt’s (2011), Stoffel’s (2012) and Wolsey’s (2017) participants, means that they experience exclusion by classmates, in addition to discrimination from unpredictable compliance by teaching staff.

Sjunneson makes the important point that there is a lack of visibility of disabled people in classes (because they simply aren’t there) and how important it is to other people with disability to have connections, role models and community. Sjunneson writes: ‘It’s one thing to have a non- disabled persons tell you that they understand your access needs and act as an ally, but is quite another to sit around with a bunch of other disabled people and bitch about access issues among yourselves’ (2021: 233). Ableism is the holding of biases about disability that contribute to exclusionary policies, practices and perceptions. These are very often systemic in nature, and may be conscious and unconscious (Brown and Leigh 2018). Sjunnesons’s memoir confronts ableism in most social domains: the family, the school, dating, the workplace, religion as well as tertiary education. In other words, ableisms are ubiquitous. But training to be a teacher at a university is where a person’s identity can undergo a seismic shift following a lifetime of negative experiences. They embrace a disabled identity, accept a beautiful disabled body and begin a new life stage of disability activism.

5. Educating the educators

For people with disability, building knowledge about their disability is a common experience. This results in an invisible and emotional workload that is not recognised by the institution or its staff (Dolmage 2017; La Monica 2016; Goode 2007). This work is threefold:

1. The work involved in managing your own disability and the course you are undertaking (Goode 2007).

2. The work involved in enduring microaggressions and ‘battling the system’ (ibid), and

3. The work involved in educating others as to the disability, impairment effects, accessibility technology usage and accommodations needed.

Most students with deafblindness cite an emotional burden of educating others (Alexander and Alper 2014; Arndt 2011; Girma 2019a; Stoffel 2012; Watharow 2021a; Wolsey 2017). Some describe abandoning their courses because it all became ‘too hard’. Others succeeded despite these barriers. A participant in Everson and Enos (1995: 6) recounted: ‘I found that many of the times teachers were unable to strategize with me the best way to receive and understand the course work. I felt a “we tried, but we failed” attitude. Have to come up with the lesson plans to teach me. This experience taught me that I had to be an educator too.’

Author 1 writes that ‘the reality is that deafblindness in student populations is rare and few of the staff will have experiences or exposure to deafblind students. Universities must share in the knowledge- building to decrease the student burden. Many impairment support organisations are happy to arrange educational sessions for educators (Watharow 2021a: 31). Author 1 is a ‘first generation’ university student, meaning they are the first student with deafblindness the accessibility unit has had to support.

6. Temporal hurdles

The time taken, spent and lost is a significant obstacle for many students with disability. Students wait for support, equipment and other provisions. Goode (2007) notes that students with disabilities need more time because they have to manage their coursework, lives and disability. Stoffel (2012) and Watharow (2021a) write that, generally, communication with people with deafblindness takes longer, five times as long and seven times as long, respectively, as that for the sighted-hearing student. Möller (2003) and Hersh (2013) also observe that communication and accessing information takes longer for people with deafblindness in general. But it takes lived experience to describe this in intimate detail, how this varies from individual to individual and just how long is ‘taking longer’.

In summary, it appears few students with deafblindness are in the academy. There are few stories of successful experiences that can inform universities, colleges, staff and future students. How do we plan for better experiences and outcomes, how do we improve accessibility and communication, reduce microaggressions, discrimination and ableism? How do we manage the time needed and how do we reduce the burden of educating the educators when there is no blueprint? As detailed, the extant literature fails to consider the teacher’s or student’s experiences with teaching and learning, accommodations and accessibility, difficulties and problem-solving, and potential mutuality. We now discuss this research project, its methodology and conduct, and the results.

Methodology

In 2017, after one month of life-writing classes, the student and academic discussed writing a paper together, deciding on narrative inquiry as the most effective means to share their experiences. Standpoint methodology underpins this choice. The research uses tandem semi- structured interviews to yield data on the experiences of teaching and learning when accommodating a complex communication disability. Other narrative documents (emails and personal communications) inform this work and, concomitantly, give the student better access to communication than via a single modality. The gap between the interviews and this paper has been occupied by the first author with completion of a Master’s course and a doctoral programme and multiple waves of Covid-19. This lived experience continues to be one of the barriers to inclusion and participation in academia and this renders this paper still relevant (unfortunately).

Narrative inquiry is a broad method for soliciting new knowledge by exploring lived experiences in safe, sensitive inquiry spaces, allowing participants to tell stories in their own words, signs and ways (Creswell and Poth 2018). These glimpses of lived experience become the data for analysis.

Co-creating and co-producing research with people with disabilities is critically important to ensure inclusion and voicing of experiences. In fact, Milner and Frawley are emphatic that including people with a disability in research creates ‘a more socially just way of knowing disabled lives’ (2019: 383). People with deafblindness want to be part of research (Roy 2019). Specifically, people with deafblindness need accessibility and environmental supports to facilitate storytelling (Roy 2019, 2021; Watharow and Wayland 2022).

This research involves multiple layers of student–teacher co- creation, co-production: generating ideas (co-ideation), deciding the research methodology (co-design), implementing the research (co- implementation) and collecting and interpreting storied data with both perspectives honoured (co-evaluation) (Pearce et al. 2020). The student and academic generated their own question list for the other in the semi-structured interviews. Interviews were recorded and transcribed by a transcription service. Using a reflexive analysis process (Clarke and Braun 2013), transcripts were examined. Note here that NVivo could not be used as it remains inaccessible to many with low vision generally including students and researchers with deafblindness. This is another example of the lack of inclusion of accessibility features at inception in new technologies (Rios et al. 2016).

Conduct of the research

The narrative inquiry space needed to be safe and accessible. We chose the second author’s office (the pedagogue) as it was easy for the student to access, quiet with low ambient environmental noise (maximising the student’s and lecturer’s abilities to hear and record each other and engage). Lighting was dimmed to minimise the student’s contrast sensitivity.

Emails established a mutually convenient time to meet. An accessibility assistant (AA) made phone calls on the student’s behalf, relaying content to the student and setting up assistive technology. They attended the interviews. Communication modes included: mini-tech Bluetooth wireless microphone, hearing aids, large-font email, paper and Pentel sign pen. The accessibility assistant was able to use tactile messaging (tactile sign language, social haptics and manual alphabet) to communicate, but only on body messaging of Yes, No and laughing were needed.

Ethics approval (ETH18-2488; ETH17-1398) was obtained from the university for the student’s doctoral research application, undertaken concomitantly to the Master’s subject with the academic. This approval allowed the student’s experiences to be used as a data set.

Key supports for undertaking the course

Both a notetaker and accessibility assistant (AA) attended to support learning and class participation. Author 1 created the position of AA with funding from the university to provide a trained human bridge between the student and the university world. ‘AAs work closely with people with disability to identify barriers and develop creative solutions in order to improve access for the person with disability’ (S. Hopkins, personal communication, 2 August 2018). The university’s accessibility unit provided funding and the oversight of an accessibility consultant. Assistive devices used included hearing aids, Minitek Bluetooth microphone system, Roger PenTM (all-inclusive wireless microphone), speech-to-text on smartphone, iPad, two laptops and Google Docs set up for live transcription of the class content. Social haptics, touch messaging and tactile sign were used by the AAs with the student to enhance inclusion in class. It was important to have two human assistants as live transcribing is tiring and this enabled rest breaks during the three-hour weekly class.

Results

From the ‘ancestral homeland’ of disability, this paper navigates three distinct diasporic chronologic concepts:

1. starting point (when student and academic meet before class starts);

2. journey of participating and progressing in learning and teaching; and

3. reflections back ‘home’.

The transcript quotes help to illustrate the learning journey: we have tried to retain a sense of the collegiality of communication that was a hallmark of this undertaking, with longer excerpts rather than simple soundbites. The student is referred to as ‘student’ and the academic- lecturer-teacher as ‘academic’.

The starting point

The accessibility consultant sends an introductory email to the academic, copying in the student. The student emails the academic to introduce herself and request a meeting prior to the course. The student is distressed by the consultant’s ‘deficit model’ email; it feels like a catalogue of ‘can’t dos’.

Student: My first question – What did you think when you got the email? I think that was, for you, the initial point; whereas for me, the initial point was when I actually met you. I don’t know if I told you but, even though I had given permission for the exchange of information, I had never seen that email. I ... went nuts when I saw it. Absolutely nuts. That’s why I started off that email to you saying, ‘Ignore the email’ ... I didn’t know what you were like. You could have been anybody. And you would have gotten this thing and gone: ‘Holy crap, what have I got here?’ So, I fired that email off straightaway but there was a lot of fallout from that. ... it was something I think they’re used to with a number of conditions, where it is reasonably predictable to have a short list. You come up with a short deficit list and whatever but this went on and on ... I thought: ‘This is not me.’

Academic: Whereas I think you’re one of the most able, capable students I’ve met in terms of your work.

Student: I think the pre-preparation visit is the thing that’s really critical to actually introduce yourself ... it’s important to find out how you like to teach.

Academic: So, what did that make me think, that long list? I was intrigued. I wasn’t frightened. I looked at my watch or the date and thought: ‘Holy hell, I’ve got a lot to do, I’ve got to start doing it now.’

Student: Did contact at the pre-planning meeting change this?

Academic: Actually, I’ll tell you the truth. Because I read that email as you are being funny, ‘Ignore everything,’ I took that email as compliant. I thought that’s what it [the accessibility unit] has to do. And then you said: ‘Please ignore it.’ I thought that was funny, so I thought: ‘I’m going to like this woman.’ So, that’s how I took it. So, obviously you’ve freaked, and I’ve gone: ‘This is going to be fun.’

Student: Look, it was just confronting.

Academic: I can see that. So, how did that [the long list] make me feel? It really made me think because, as I’ve told you before, I have taught a sight-impaired student, which was fine. I didn’t really have to make anything accessible there. That was years ago, and I don’t even know what we did or what her support was. She came with someone, and someone took notes, I suppose. But it just made me think sight and hearing, this is going to be such a huge learning curve for me. And also, I found it very humbling because ... I’ll confess, I had never, ever thought about it.

The introductory sessions between the student and academic were not just about what the academic needed to do for the student; the student wanted to know how she could fit with how the academic liked to teach. There was thus a mutuality of engagement in the accommodations.

Student: Accessibility is gatekeeping. Apparently, it’s usual for the accessibility consultant to liaise with you and not for me and that’s, I think, done ... [because] they don’t want the students running around telling the staff what they have to have, what they need to do and all that sort of thing...

Academic: I think it’s compliancy [with the] legislation.

Student: But ... it takes away your ability to advocate for yourself, and that’s disempowering, and it also means that the dialogue’s been written by somebody else. That you don’t go: ‘I can’t do anything’ versus: ‘You can do anything you put your mind to.’ I think you’ve got to come somewhere on that spectrum and that means accepting that the classroom space has just got to be, I guess, workable and good, rather than replicating 100 per cent the experience of an able-bodied student. Does that make sense? I was about seven when I realised that I [couldn’t pretend] I was like everybody else ... There are things that you accept, that this is quid pro quo, that you need to accept, which is why I like talking and saying: ‘Okay, how do you like to teach and how can I fit in with that’ as well, so it’s not just a one-way conversation of you ticking boxes: ‘Yes, I’ve provided all the materials in the alternative format and I’ve done this.’ It’s about saying [from my view]: ‘Well, okay, what can I do to make it work the way you would like to teach.’

Progression

The academic checked in regularly with the student, who gave feedback on their progress. Communicating together helps mutual understandings and fosters reasonable expectations.

Checking in – academic to student via email

Academic: Our first class together. Was it all right for you? Anything I can do better? Or do less of? Or more of? I will get more used to the microphone – it really is no impediment at all, even going around the class and sharing it. Just let me know – honestly – if I can help any more in my classroom actions, or if I hindered you in any way (Author 2, personal communication, 7 August 2017).

Student: [C]lass was good, I was flagging badly by the end but that wasn’t an issue. Yes, that microphone is the good one and for once it lasted the distance! As you can tell, I can’t tell direction of sound so, if in doubt, touch me so I know where you are (opposite really to the average student). We have a new notetaker so Sophie [head accessibility assistant] can concentrate on looking after me; she will find and enlarge any PowerPoints or articles etc. (Author 1, personal communication, 7 August 2017).

Communicating

Academic: Okay, so let me ask you a few things – September 1 [2017] was the first time I could not read one of your written words in your email ... There was a word ... I could decipher all of your emails except for this one word. And I sat there and ... thought, I really want to know what it means ... Do I ask her? How is she going to feel if I ask her? So, I sent it back to you and my question is: Did you mind me sending it back to you? The standard of your work is so high that it must simply be frustrating for you. And have you come to terms with it yet, that you have these sort of word salads? Did you mind that I asked what that word was?

Student: Gosh no. No. You had established quite a ... rapport with humour at the base. No. And class was a safe space, you were a safe space. It was fine. Look, to be honest, this is coming from someone who’s had the most magnificent command of written English and to have lost that. You lose the book as a book form; you lose stuff all the time. But, yeah, I do mind. I do mind that – not that you asked me – I do mind my own loss of it.

Academic: So, frustration is not the right word. It’s bigger than that, isn’t it?

Student: Grief. It is a loss of skills. It’s a loss of competency. It’s a degenerative illness; it’s just loss of competencies all the time.

Having reasonable expectations

The academic discussed a presentation given by an officer from the university’s Equity and Diversity Unit on accessibility.

Academic: [T]here were things that she said in that presentation, and I thought, I have to really up my game here. And she was talking about accessibility. She actually said (and I think it’s not feasible) that everything has to be accessible. Is that feasible?

Student: No. No. And it’s also not feasible, that whole concept – this is why you’ve got to take an individual approach and not have policies for the deaf, policies for the blind, and policies for the deafblind people by marrying the two of them together – that’s not going to work. And it hasn’t worked, and it isn’t working. You have to have an individualistic approach, and what is accessible for one person may not be accessible for another ... I don’t expect perfection. And it’s much more fun trying to kind of fit in where we can, manage where we can’t and ... I’m not driven to be the top student in the class and I’m just happy to be there and get as much as I can out of it and give whatever I can back.

The student commented on how having deafblindness meant you were unavoidably and obviously visible in the classroom.

Student: Once you get a disability (like deafblindness), you can’t help but become un-private. You can’t ... And there are things you cannot do ... And so, it’s silly to have the mantra that anything’s possible. I think a lot of things are possible. Some things just aren’t and it’s very important, I think, that you have some sort of acceptable balance.

The academic sought to clarify that the present classroom did not ‘other’ the student.

Academic: It does make sense. I’ll put it to you, I think our classroom, the students I’m talking about, I don’t think there was any ‘othering’ going on then? You were just another person in class, although we were walking around with a microphone, of course. Did you feel that? Did you feel comfortable in class?

This was an important gesture because the academic did not assume that all was well (which it was).

A complication

When students were presenting their work and research to the larger group, it became apparent that the assistants could not make these accessible quickly. The solution was to request material two days ahead of class to let the assistants convert. Not all classmates could do this, and the student felt guilty that her classmates had to finish their work earlier than they may have liked.

Student: With the exception of about two or three, we got everybody’s. When it became obvious it was a problem, which we had to experience first for it to be a problem, it wasn’t something I think you would have pre-empted. ... two things: is it reasonable to ask people with no experience and no support in accessibility to produce their work in an accessible format? Versus, if we do expect that their work is accessible, then the students ... will take that with them and that will be a better thing for society as a whole, if we’re producing people who are attuned to that need. I think, if you’re a student and you’re under the pump and you’re working as well ... you just want to get your work done.

Academic: It’s true ... [so] we asked them to deliver it earlier so that it could go to one of your support people to make accessible. I didn’t ask the students to make it accessible.

Student: No, no, I know that. I know that. But we were still asking them to send it earlier, which could have been an imposition if they were late-night workers [for example]. ... I am aware there are issues around that. I don’t know how to address them. They only came upon me – I don’t always see patterns and themes and things with clarity when I’m in the middle of them. When I’m on the other side of them, I usually do.

Academic: I guess asking everyone to make their material accessible would be an onus on them, but I have no problem with supplying material to your support people to make accessible. Not just you, but anybody else who needs it. Is that not going far enough? I’m not sure ... we spoke about the notion we need to get this early so we can make it accessible for [you]. So, they all had that in their heads and a lot of them jumped to it and did it very well, I thought. Without one whinge. I think that [the] onus should really be on the accessibility people, I do. And if we need more people in accessibility, then we should get more people in accessibility. I don’t think that is too much to ask.

Reflections

The student reflected on and devised ways to share with other deafblind students navigating the gatekeeping of well-meaning accessibility units. She has nine points of advice for future students with access/ communication needs:

• Meet beforehand to discover a lecturer’s preferred teaching style and activities, so you can discuss what will work and what needs to change. In my case, it is not possible to teach and fully accommodate my communication needs, because one-on-one would work best for me but not for the university. So, lower your expectations for small stuff and work on the big stuff.

• Introduce yourself to the class, if your needs are obvious and you are comfortable doing so. This makes everyone understand why you need the assistance. I have aids, devices, iPad, laptop, two assistants and (lecturer) checking that I am tuned in and getting some/most of what is being said.

• Think in advance about what accommodations you are likely to need for student seminars and presentations.

• Review how things are going. You might need to talk to an accessibility consultant or techie for a better system. Keep talking to the lecturer – they cannot read your mind.

• Be creative in problem-solving and let your accessibility/disability support officer know about unexpected, unusual difficulties. One of mine was proofing my work – I have lost sight of punctuation, spelling, word placement and formatting. Because this was of importance in this particular subject, rather than be penalised for sloppy-appearing work, we discussed it with my support person, and the university organised for an editor to look over and do minor renovations to render [work] up to the expected standard. This did not mean that my work was altered in any thematic or creative way, merely that the i’s were dotted and the t’s crossed.

• Tech failure is real and ... frustrating when it does occur. We had two or three such episodes. I have learned not to stress, and get notes from other students or the lecturer, transcripts of multimedia presentations, or links to look at later. It might not be as good as being in the moment, but close enough is good enough.

• People fail too – again, this prevented me from attending two classes (AA or notetaker sick/injured). Attendance whenever possible is important when there is a communication disability. I have missed class only because of the above.

• Love what you are doing, because it is really hard work just trying to participate and learn.

• Participate as much as you can. This was the one area I felt unequal to the task because I was not always in step with class discussions. How to improve? Not sure. I contributed whenever I could, even if this was tardy or off-piste!

The academic reflected on how she would advise a colleague who had a student with deafblindness, or other disability, in their class:

• Meet beforehand, but not with disability lists sent from accessibility (unless the student requests). Meet the student as you would any student if they wished to discuss their studies with you; it is their legal right to access equal educational opportunities. Ask the student with disability exactly how you, as the academic, can make their inclusion into the classroom pedagogy as smooth and effortless as possible; let them explain their needs.

• Be transparent in class. Do not be fazed by needing extra moments to make sure all students feel included. If something goes wrong, explain, but keep your sense of humour.

• In the first class, when everyone introduces themselves one by one, after the student speaks, invite any and all assistants to introduce themselves too; the team of assistants should be included as much as each individual wishes.

• After the student and assistants introduce themselves, explain to the whole class what adaptations you will make during class; for example, moving around the classroom with a microphone whenever a classmate speaks, checking whether assistants need more time, asking the student to contribute to the discussion on the topic/ readings, as you do with other students in class.

• Sendaquickemailaftereachclasstothestudent,toensuretheyfeel included, discuss what may have gone wrong, ask how to improve pedagogy and hear what would make life easier for their assistants.

• For any group work, watch group dynamics where the student is situated to ensure that exclusion is not occurring and everyone in the group is comfortable.

• If tech fails (it does!), follow up with the student and provide notes from the lecture/seminar/presentation, ensuring no component is missed.

• In this classroom, the student could not follow student presentations; ask classmates to provide a script from the presentation two days before class for assistants to make accessible so the student can follow the presentation.

• If the student misses a class because assistants are ill, or unavailable, follow up and ensure that all lecture notes/presentation material/ readings/discussion notes are forwarded immediately after class finishes.

• Keep up the transparent and continuous communication. A student’s disability should never, ever disadvantage them. In this classroom, the student presented as one of the most intellectually gifted and able students I had ever taught, and I felt I learned as much from her (more!) than she did from me.

From the student’s perspective, creating a safe space for learning was one of the greatest benefits of working with the academic in this class. This was inclusive for all differences, not just the single visible student with disability.

Student: I thought one of the things you did really well was creating safe spaces in the classroom. Not just for me – you were aware that there were Holocaust survivors and people with trauma of various kinds. How did you go about doing that?

Academic: As knowledge? Through really messing up in the past. Student: It appeared intuitive, but it must’ve been thought about in

terms of the ethics of the class.

Academic: Absolutely.

The academic explained the history behind her ‘safe classroom’ pedagogy, when a student experienced real damage in class, nearly 20 years ago, by a triggering incident about the student’s traumatic past. The academic has since researched and written about managing trauma in the classroom, and through Higher Degree Research best practice (Joseph 2011, 2013, 2016; Joseph and Latona 2017; Joseph and Rickett 2017; Joseph 2022).

Student: They talk about [this] in narrative medicine (Charon et al. 2017), not just narrative, it’s navigating the therapeutic space where the patient gives testimony of whatever’s going on with them and the doctor bears witness and then helps to formulate an affiliation and an action plan. So, I can see that.

A final reflection

After the interview, the student reflects on the achievements of the Memoir and Life-Writing course.

Student: I’ve had unexpected, good experiences and, understand, the narrative [classes] part of it has just been life-saving, because I still wouldn’t be here if it weren’t for the fact that I can actually say: ‘Wow, I can do it, it can be done.’ I can have some fun and not embarrass myself in the process. So, that’s been good.

Strengths, weaknesses and future directions

This paper was co-researched and co-authored with a person with disability, which Moore et al. (2008) argues is essential to ensuring that the research is adequately informed about the multifaceted nature of living with a disability. By intertwining disability researchers and people with disabilities, a united and informed team can confidently address the many problems facing disabled communities. Without including people with disabilities in research, the researchers’ representations are disconnected from the person with disability’s actual living experience. We like the term ‘living experience’ here because disability is very present and active in Author 1’s life. This paper’s key strength lies in uniting the living experiences of both a student with deafblindness and the academic teaching her.

To a person without a disability, many aspects and subtleties of living with a disability are invisible and intangible. Involving a disabled co- researcher, who can articulate and guide the research direction, strengthens and informs this conjoint research. By having a disabled co-creator, this paper avoids imposing unnecessary ‘solutions’ upon a disabled population.

Another strength is the academic’s commitment to meeting the student’s communication needs and understanding that the student’s participation is an empowering research opportunity. By creating safe research and layering spaces, the academic is ‘walking the talk’, meeting all the accommodation and accessibility needs of this individual student.

The research is limited by being a single case; however, it is accepted that single case studies of uncommon conditions are valid knowledge generators especially where rare conditions (such as deafblindness in younger people) (Parker et al. 2007).

More work is needed to build the knowledge platform for supporting people with disabilities and sensory impairments at universities. Compliance is critical, but creativity is needed to solve some of the problems with accessing learning for students with disability. The more that students and academics write about their experiences, the more the bank of ideas and resources will grow. This will benefit students to come.

Though this paper uses interviews conducted in 2017, the findings retain relevance (sadly) because so little has changed since then for students with deafblindness: we are still not a presence in tertiary institutions and for those of us who are, it’s still really hard work getting accessibility and the support provisions for success. Author 1’s next subject would not be as successful as this. The next academic said: ‘I am not trained for this’ and failed to modify course content and activities for inclusion and access to information. This underscores how individual and arbitrary a culture of collegial learning and support is. This then means this research remains relevant and important.

Conclusion

John Lee Clark, the prize-winning deafblind poet, writes: ‘Deafblind people can do anything. The question is not whether or not we can or should do something, but how we are going to do it’ (Clark 2014: eBook location 1698).

This work is framed by social relational disability theory and standpoint methodology, seeking to honour the dual perspectives of academic- teacher and student with deafblindness in ‘the how’ they did a course in Memoir and Life-Writing. In this student-academic tandem learning experience, we came to university, we met, we collaborated and we succeeded. The student completed the course with distinction and the dialogue generated thoughts for going forward, for students and academics to come. Universities must continue to comply with their legal and moral safeguards, and fund what is needed for each student with deafblindness to learn and for academics to provide educational oversight. In this way, constructive collaborative approaches yield positive student and academic experiences and flourishing.

References

Alexander, R. and Alper, S. (2014) Not fade away: A memoir of senses lost and found, New York, Gotham Books

Anti-Discrimination Act 1997 (NSW)
Arndt, K. (2011) College students who are deaf-blind, National Consortium on Deaf-

Blindness, 7. Available online at https://files.eric.ed.gov/fulltext/ED531768.pdf Australian Disability Services Act 1986 (Cth).

Brown, N. and Leigh, J. (2018) Ableism in academia: Where are the disabled and ill academics?, Disability & Society, Vol. 33, No. 6 pp 985-989. DOI: 10.1080/09687599.2018.1455627

Chanock, K., Stevens, M. and Freeman, S. (2010) Supporting a university student who is deaf-blind in writing for the disciplines, Journal of Post-secondary Education and Disability, Vol. 23, No. 2 pp 155-158. Available online at https://files.eric.ed.gov/fulltext/ EJ906701.pdf

Chanock, K., Stevens, M. and Freeman, S. (2011) A ‘visible’ woman: Learning with a student who is deaf-blind at university, Review of Disability Studies: An International Journal, Vol. 7, No. 2 pp 1-12. Available online at https://www.rdsjournal.org/index.php/ journal/article/view/135/439

Clarke, J.L. (2014) Where I stand: On the signing community and my DeafBlind experience, Handytype Press. eBook

50 Copyright 2024-1. Ethical Space: The International Journal of Communication Ethics. All rights reserved. Vol 21, No 1 2024

Clarke, V., and Braun, V. (2013) Teaching thematic analysis: Overcoming challenges and developing strategies for effective learning, The Psychologist, Vol. 26, No. 2 pp 120-123

Clifton, S., Llewellyn, G. and Shakespeare, T. (2018) Quadriplegia, virtue theory, and flourishing: A qualitative study drawing on self-narratives, Disability & Society, Vol. 33, No. 1 pp 20-38

Creswell, J.W. and Poth, C.N. (2018) Qualitative inquiry and research design, London, Sage Publications, fourth edition

Dammeyer, J. (2014) Deafblindness: A review of the literature, Scandinavian Journal of Public Health, Vol. 42, No. 7 pp 554-562. Available online at https://doi. org/10.1177/1403494814544399

Danermark, B.D. and Möller, K. (2008) Deafblindness, ontological security, and social recognition, International Journal of Audiology, Vol. 47, No. 2 S119-S123. DOI: 10.1080/14992020802307388

Dolmage, J.T. (2017) Academic ableism: Disability and higher education, Ann Arbor, Michigan, University of Michigan Press

Emerson, E., Milner, A., Aitken, Z., Krnjacki, L., Vaughan, C., Llewellyn, G. and Kavanagh, A. (2019) Overt acts of perceived discrimination reported by British working- age adults with and without disability, Journal of Public Health, Vol. 43, No. 1 pp 16-23. Available online at https://doi.org/10.1093/pubmed/fdz093

Everson, J. and Enos, J. (1995) Post-secondary education: Opportunities and challenges for students with are deaf-blind, HKNC-TAC News, Vol. 8, No. 1 pp 1-13

Fichten, C. S., Nguyen, M. N., Asuncion, J., Martiniello, N., Jorgensen, M., Budd, J., Amsel, R. and Libman, E. (2016) An exploratory study of college and university students with visual impairment in Canada: Grades and graduation, British Journal of Visual Impairment, Vol. 34, No. 1 pp 91-100. Available online at https://doi. org/10.1177/0264619615616259

Fines-Neuschild, M. (2022) Innovative EDI practices by granting agencies, Quebec Interuniversity Equity Diversity Inclusion Network (RIQEDI)

Girma, H. (2019a) Haben: The Deafblind woman who conquered Harvard Law, Sydney, Hachette Australia

Girma, H. (2019) Excerpt from The Deafblind woman who conquered Harvard Law, Harvard Medical School, 8 November. Available online at https://news.harvard.edu/ gazette/story/2019/11/excerpt-from-the-deafblind-woman-who-conquered-harvard-law/

Goode, J. (2007) ‘Managing’ disability: Early experiences of university students with disability, Disability & Society, Vol. 22, No. 1 pp 35-48. Available online at https://doi. org/10.1080/09687590601056204

Harding, S. (2004) Introduction: Standpoint theory as a site of political, philosophic, and scientific debate, Harding, S. (ed.) The feminist standpoint theory reader: Intellectual and political controversies, London, Routledge pp 1-15

Hersh, M. (2013) Deafblind people, communication, independence, and isolation, Journal of Deaf Studies and Deaf Education, Vol. 18, No. 4 pp 446-463. Available online at https://doi.org/10.1093/deafed/ent022

Jaiswal, A., Aldersey, H., Wittich, W., Mirza, M. and Finlayson, M. (2018) Participation experiences of people with deafblindness or dual sensory loss: A scoping review of global deafblind literature, PloS one, Vol. 13, No. 9 e0203772. Available online at https://doi.org/10.1371/journal.pone.0203772

Joseph, S.A. (2011) Supervising life-writing of trauma in a tertiary setting, TEXT: Journal of Writing and Writing Programs, Vol. 15, No. 2 pp 1-16

Joseph, S.A. (2013) The lonely girl: Investigating the scholarly nexus of trauma life-writing and process in tertiary institutions, TEXT: Journal of Writing and Writing Programs, Vol. 17, No. 1 pp 1-13

Joseph, S.A. (2016) The exegesis, autoethnography and the ethical management of enactive practice, Kroll, J., Melrose, A. and Webb, J. (eds) Old and new, tried and untested: Creativity and research in the 21st century university, Illinois, Common Ground Publishing pp 107-122

Joseph, S.A. and Latona, F. (2017) Guiding life-writers: The supervision of creative doctoral work interrogating personal trauma, New Writing: The International Journal for the Practice and Theory of Creative Writing, Vol. 14, No. 1 pp 23-35

Joseph, S.A. and Rickett, C. (2017) Supervisor’s perspectives on the ethical supervision of long form writing and managing trauma narrative within the Australian tertiary sector, Ethical Space: The International Journal of Communication Ethics, Vol. 14, Nos 2 and 3 pp 61-71

Joseph, S.A. (2022) Managing life-writing and trauma: A reflection, Lengelle, R. and Den Elzen, K. (eds) Writing for wellbeing: Research, theory and practice, Abingdon, Oxon, Routledge

La Monica, N. (2016) Surviving or thriving in academia: Autoethnographic accounts of non-visibly disabled grads’ experiences of inclusion and exclusion, PhD thesis, McMaster University. Available online at https://macsphere.mcmaster.ca/handle/11375/20404

Larsen, F.A. and Damen, S. (2014) Definitions of deafblindness and congenital deafblindness, Research in Developmental Disabilities, Vol. 35, No. 10 pp 2568-2576. DOI: 10.1016/j.ridd.2014.05.029

Milner, P. and Frawley, P. (2019) From ‘on’ to ‘with’ to ‘by’: People with a learning disability creating a space for the third wave of inclusive research, Qualitative Research, Vol. 19, No. 4 pp 382-398. Available online at https://doi. org/10.1177/1468794118781385

Möller, K. (2003) Deafblindness: A challenge for assessment is the ICF a useful tool? International Journal of Audiology, Vol. 42, No. 1 S140-S142

Moore, M., Beazley, S. and Maelzer, J. (2008) Researching disability issues, London, Open University Press

Mutanga, O. (2017) Students with disabilities’ experience in South African higher education – a synthesis of literature, South African Journal of Higher Education, Vol. 31, No.1 pp 135-155. DOI: 10.20853/31-1-1596

Nordic Centre for Welfare and Social Issues (n.d.) The Nordic definition of deafblindness, Nordic Centre for Welfare and Social Issues

Ozdowski, S. (2002) 6th National Deafblind Conference, 12 July. Australian Human Rights Commission. Available online at https://www.humanrights.gov.au/news/ speeches/6th-national-Deafblind-conference

Paradies, Y. (2018) Whither standpoint theory in a post-truth world? Cosmopolitan Civil Societies: An Interdisciplinary Journal, Vol. 10, No. 2 pp 119-129

Parker, A.T., Davidson, R. and Banda, D. (2007) Emerging evidence from single- subject research in the field of deaf-blindness, Journal of Visual Impairment & Blindness, Vol. 101, No. 11 pp 690-700. Available online at https://doi. org/10.1177/0145482X0710101103

Pawson, R., Boaz, A., Grayson, L., Long, A. and Barnes, C. (2003) Types and quality of knowledge in social care, Social Care Institute for Excellence

Pearce, T., Maple, M., Shakeshaft, A., Wayland, S. and McKay, K. (2020) What is the co-creation of new knowledge? A content analysis and proposed definition for health interventions, International Journal of Environmental Research and Public Health, Vol. 17, No. 7 pp 229-247. Available online at https://doi.org/10.3390/ijerph17072229

Restrepo, E.G.Y. and Garcia, F.G. (2016) Non-intrusive accessibility in inclusive higher education. Proceedings of the 7th International Conference on Software Development and Technologies for Enhancing Accessibility and Fighting Infor-exclusion pp 119-126. Available online at https://doi.org/10.1145/3019943.3019961

Rios, D., Magasi, S., Novak, C. and Harniss, M. (2016) Conducting accessible research: Including people with disabilities in public health, epidemiological, and outcomes studies, American Journal of Public Health, Vol. 106, No. 12 pp 2137-2144. Available online at https://doi.org/10.2105/AJPH.2016.303448

Rolin, K. (2009) Standpoint theory as a methodology for the study of power relations, Hypatia, Vol. 24, No. 4 pp 218-226. Available online at https://doi.org/10.1111/j.1527- 2001.2009.01070.x

Rowland, P., McMillan, S., McGillicuddy, P. and Richards, J. (2017) What is ‘the patient perspective’ in patient engagement programs? Implicit logics and parallels to feminist theories, Health, Vol. 21, No. 1 pp 76-92. DOI: 10.1177/1363459316644494

Roy, A. (2019) Consultation, research and policy development: Lessons from the deafblind community about co-creating a more inclusive world, PhD thesis, University of Melbourne. Available online at https://rest.neptune-prod.its.unimelb.edu.au/server/api/ core/bitstreams/21c3afdb-a7c1-510c-b56a-4d09fcda0d6e/content

Schneider, J., Gopinath, B., McMahon, C., Teber, E., Leeder, S.R., Wang, J.J. and Mitchell, P. (2012) Prevalence and 5-year incidence of dual sensory impairment in an older Australian population, Annals of Epidemiology, Vol. 22, No. 4 pp 295-301. Available online at https://doi.org/10.1016/j.annepidem.2012.02.004

Shakespeare, T. (2014) Disability rights and wrongs revisited, London, Routledge, second edition

Sjunneson, E. (2022) Being seen: One Deafblind woman’s fight to end ableism, Canada, Simon & Schuster/Simon Element

Simcock, P. (2017) One of society’s most vulnerable groups? A systematically conducted literature review exploring the vulnerability of deafblind people, Health & Social Care in the Community, Vol. 25. No. 3 pp 813-839. DOI: 10.1111/hsc.12317

Spiers, E. and Hammett, R. (1995) Students who are deaf-blind on campus, American Council on Education. Available online at https://eric.ed.gov/?id=ED393252

Stoffel, S.M. (2012) Deaf-blind reality: Living the life, Washington, DC, Gallaudet University Press

United Nations Convention on the Rights of Persons with Disabilities (2006)

Vehmas, S. and Watson, N. (2014) Moral wrongs, disadvantages, and disability: A critique of critical disability studies, Disability & Society, Vol. 29, No. 4 pp 638-650. Available online at https://doi.org/10.1080/09687599.2013.831751

Watharow, A. (2021a) Owning my room: Building a safe, accessible and productive space for student researchers with complex communication disabilities, Burke, C. and Byrne, B. (eds) Social research and disability developing inclusive research spaces for disabled researchers, Abingdon, Oxon, Routledge

Watharow, A. (2021b) ‘Not knowing what is going on’: The experiences of people with deafblindness–dual sensory impairment in Australian hospitals – a mixed methods study, PhD thesis, University of Technology Sydney

Watharow, A. and Wayland, S. (2022) Making qualitative research inclusive: Methodological insights in disability research, International Journal of Qualitative Methods, Vol. 21 pp 1-10. Available online at https://opus.lib.uts.edu.au/ bitstream/10453/170444/2/16094069221095316.pdf

Wayland, S.M. and Watharow, A. (2017) More than accessibility: Navigating the supervision relationship with students with disability, The supervision whisperers. Available online at https://thesupervisionwhisperers.wordpress.com/2017/09/19/more- than-accessibility-navigating-the-supervision-relationship-with-students-with-disability/

Wolsey, J.A. (2017) Perspectives and experiences of deafblind college students, The Qualitative Report, Vol. 22, No. 8 pp 2066-2089

Wolsey, J.A. (2018) Resiliency and adaptability in the experiences of Deafblind university students, Dissertation, Lamar University. Available online at https://www.proquest.com/ docview/2153925318

World Federation for the Deafblind (2018) At risk of exclusion from CRPD and SDGs implementation: inequality and persons with deafblindness, World Federation of the Deafblind, Oslo. Available online at https://www.wfdb.eu/wp-content/uploads/2019/06/ WFDB_complete_Final.pdf

World Federation for the Deafblind (2023) Second global report on the situation of persons with deafblindness: Good practices and recommendations for the Inclusion of persons with deafblindness, World Federation of the deafblind, Oslo. Available online at https://wfdb.eu/wp-content/uploads/2023/03/ENG_WFDB-2nd-Global-Report_- FINAL-V6.pdf

Funding

The authors received no specific funding for this paper.

Authors’ contributions

Both authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by both authors. The first draft of the manuscript was written by both authors and they commented on later versions of the manuscript. Both authors read and approved the final manuscript.

Acknowledgements

Thanks to the Memory and Life-Writing class at University of Technology Sydney (UTS), spring semester 2017; Sophie Hopkins, head accessibility assistant; the accessibility assistant team: Oliver Kenyon, Samantha Lejeune, Grace MacKenzie, Alexander Moulis, Ronnith Morris and Sharon Taylor; and to Dr Sarah Wayland, for her advocacy around accessibility within UTS.

Notes on the contributors

Associate Professor Sue Joseph (PhD) has been a journalist for more than forty years, working in Australia and the UK. She began teaching print journalism at the University of Technology Sydney (UTS) in 1997. She is now a Visiting Fellow at UTS, a Senior Research Fellow at the University of South Australia, and HDR supervisor at Central Queensland University and the University of Sydney. Her research interests include sexuality, secrets and confession, framed by the media, ethics and trauma narrative, memoir, reflective professional practice, ethical Higher Degree Research supervision and Australian creative nonfiction. She has published four books, the most recent entitled Behind the text: Candid conversations with Australian creative nonfiction writers (Hybrid Publishers, 2016). She is currently joint and reviews editor of Ethical Space: The International Journal of Communication Ethics, and co-editor of Palgrave Studies in Literary Journalism.

Dr Annmaree Watharow (PhD) is a medical practitioner turned researcher. In her final year of medicine, Watharow was diagnosed with Usher syndrome – a degenerative condition causing deafblindness. Annmaree returned to university in 1992 to complete a Master’s in Psychological Medicine. Watharow’s thesis explores the mental health of female GPs. As her degenerative condition worsened, Watharow returned to university so that some opportunity might come out of this adversity. Her PhD examines the hospital communication experiences of the deafblind. Her first book for university health and social care students is Improving the experience of health care for people living with sensory disability: Knowing what is going on (2023). She is currently the Lived Experience Fellow at the Centre for Disability Research and Policy, University of Sydney.