The 2022 Inclusive Teaching forum introduced us to the many ways teachers and Higher Degree Research (HDR) supervisors can support students with diverse needs, including those students with disability. TECHE recently spoke to PhD candidate Adam Johnston and his HDR supervisor Associate Professor Kathleen Tait about their experience.
Adam, tell us a little about yourself and your research.
As a 49-year-old-man confined to a wheelchair by cerebral palsy (see box below) I know mine is a more fortunate outcome than most. With my sight, hearing, and intellect all largely intact my life has included opportunities many with my condition will never experience. This is due to loving parents, who sat by many hospital bedsides, fought, and paid for much physical therapy, and were deaf to many experts who said that I should be put in a home, and would never make it past Grade 3 at school – so why were they worrying about my education?
After twenty-plus years of my own submission writing, countless terms on committees and, watching disability advocacy and support bodies up close, invocations of ‘inclusion’ and ‘diversity’ do not convince me anymore. Today social justice suffers from the law of diminishing returns. People would always be presumed to be living with disability, while Rule 7.5 of the Rules for Support of NDIS Participants specifically forbade any funding for treatments or interventions designed to restore or improve a person’s functional capacity.
I wanted to investigate the question “How could restorative justice conceive of providing the wheelchair but never of lighting the path to the wheelchair’s redundancy, as the ultimate act of inclusion?”. I chose Macquarie to complete my doctoral studies, as it was where I completed my undergraduate career and, in the old real estate lingo of location, location, location, I wanted easy access to a library and other resources.
I enrolled in my PhD as a part time student in the Macquarie School of Law in 2016. My PhD topic is: From Citizen to Charity Case: Has Contracted Welfare Breached the Sovereign’s Duty to Her Subjects? My thesis considers several parallel but related processes in Australia’s legal and social history. The main one is the establishment of the National Disability Insurance Scheme (NDIS) which is aimed to bring certainty of service and support to all eligible people with permanent impairments.
Kathleen, tell us a little about working with Adam as his HDR supervisor.
Adam is a solicitor, holding a master’s in law from the University of New England, Armidale, and a Graduate Diploma from the Australian Institute of Company Directors. During his studies, he was a Senate Intern, and a delegate to both the 1998 Constitutional Convention on a Republic and the 2001 Corowa People’s Conference. He is a former long-term Member of the Government Solicitors Committee of the Law Society of NSW and has worked in various complaint handling roles for the NSW Ombudsman and the Energy and Water Ombudsman NSW (EWON). Adam serves on numerous advisory and governance committees as a Consumer Advisor to his Local Health Service. In addition, Adam is a PhD (Law) Student who also has Cerebral Palsy. Adam’s principal supervisor is Dr Francesca Dominello from Macquarie University Law School. Francesca and Adam invited me to take on the role of Adam’s Associate Supervisor in 2020.
Adam experiences Spastic Quadriplegia Cerebral Palsy. The term ‘spasticity” describes the very tight fine motor and gross motor muscles. The term ‘quadriplegia” means that all his limbs are affected, and he cannot walk. Consequently, Adam uses a range of technology to assist him including a mobile wheelchair for getting out and about, and a manual wheelchair for getting around his home. For computer work, Adam uses speech to text software known as Dragon NaturallySpeaking. Dragon speech recognition software makes it easier for anyone to use a computer. Basically, you talk, and it types. Adam uses his voice to create and edit documents or emails, launch applications, open files and to control his computer mouse. Here is a short YouTube video to explain how this system works.
What kinds of support do you offer Adam as an HDR supervisor?
As with all my HDR students, wherever I see an opportunity for them to publicise their research, whether via a peer reviewed publication, a newsletter, a conference, or an offer of advocacy or funding support, I forward this information to the student, and we discuss the relevance of that opportunity to their thesis requirements.
In 2022, for example, Adam presented the outcomes of his research at Macquarie School of Education research forum, the Macquarie School of Law HDR Conference “New Directions in Legal Research Conference”, and at the Biennial Civil Law Conference. To present at these forums and conferences, Adam was able to access funding via the Student Wellbeing team, for the creation of footnote referencing, as this task would have been much too time consuming to perform using Dragon speech recognition software. As a team, Francesca and I also support Adam with his conference presentations in real time; for example, assisting him by forwarding the Power point slides while he speaks to the information presented in the slides.
I have a strong history of co-authoring with my postgraduate students, and along with another of my students Evan Bizan, Adam and I have been successful with a forthcoming 2023 co-authored article accepted as part of a special issue for the journal Laws, entitled “New Horizons in Disability Law: Challenges and Opportunities for Persons with Disabilities in Post-pandemic World” (see details below).
I also had the opportunity to put Adam in touch with another Macquarie PhD student, Jiayu Wang in the Department of Linguistics, who is conducting a project called “Shaping Writer Identity of Doctoral Students in Co-authoring with Supervisors for Publication” under the guidance of Dr. Cassi Liardet and Dr. Juliet Lum. As a team, Adam, Francesca, and I participated in Jiayu’s study which investigates the writing process of doctoral students’ co-authoring with their supervisor for publication in the areas of Arts and Social Sciences and how the co-authored writing process impacts and shapes students’ scholarly writer identity. We hope that by participating in Jiayu’s project, our HDR team experience was helpful for other doctoral students and supervisors to better understand the co-authorship between doctoral students and supervisors and to improving doctoral supervisory training in the Faculty of Arts.
Kathleen, in your view, how can HDR supervisors best support their HDR students with disability?
Know your support and referral services
There is no doubt that HDR students with disability are disadvantaged by the extended time that it takes them to compete tasks. HDR supervisor knowledge and referral access to support services that can assist their students who are reliant on speech to text software, for example, is therefore essential.
Leniency towards time extensions is essential
In Adam’s case, cerebral palsy is a disability requiring medical appointments and hospitalisations. Time away from study results in multiple applications for extensions of time to submit – which again, is a time-consuming process for students with disability.
Being able to pause study at any time is key
HDR students with disability must retain the ability to pause study / research at any time. However, supervisors need to consider the ramifications of pausing students’ enrolments because, while this option assists with the time allotted to thesis completion, students lose access to the library and to support services such as student wellbeing and advocacy services. In addition, HDR supervisors receive no teaching workload hours to support students with disability when they are “paused”, and thus not formally enrolled in their studies.
Think about environmental adjustments
HDR students often present their research at conferences. When supporting students with Cerebral Palsy, it is important to think about environmental adjustments that will be required at the conference venue in advance of the students’ presentation, for example, the seating arrangements and the venue layout; accessibility for mobility aids like wheelchairs; classroom acoustics; suitable adjustments for independent power point controls; sloping boards and bathroom modifications.
Investigate (research) technological solutions
There is no doubt that a PhD thesis requires a lot of writing. To support HDR students with disability who struggle with handwriting or typing, supervisors need to consider technological solutions such as an eye-gaze computer navigation system or speech-to-text technology.
Allow more time for research tasks
At supervision meetings, to help with comprehending and processing instructions, allow the student more time with transitions and tasks. Understand that students with disability maybe prone to anxiety and unrealistic time limits are likely to heighten it.
Set goals and check-in regularly
Regularly check-in with your HDR students with a disability to help them set and achieve their research goals. Once your student has reached a goal, set a new one. Be mindful to always ask the student how they would like to approach an activity – don’t make assumptions.
Finally, academics need to remember that disability occurs on a spectrum and no two students are going to be alike. The disability may have both a physical and cognitive impact. Whatever the student’s limitations are, ensure that they have a voice in supervision team discussions. It is important to know what the students are thinking and feeling so that supervisors can create an inclusive learning environment where the student feels heard and understood.
What other ways can the University support HDR students with disability?
HDR (or any) students with disability should not be disadvantaged because they choose to enrol in a part-time study capacity, as this allows them the additional time that they know it will take them to complete research and writing tasks. However, a part-time enrolment status results in students having limited access to their HDR supervisors since a reduced enrolment equates to a reduced academic supervision workload allocation. Thus, a one size fits all approach to workload allocation for supervisors of HDR students with disability is not appropriate. For reasons of equity, to support HDR students with disability, an additional category resulting in an increased adjustment to academic supervision workload needs to be created for the supervision of HDR students with disability.
It is important to remember that HDR students using wheelchairs will require special taxi transport to and from conference venues, university campuses and field sites related to their research project. Additional funding for HDR students with disability to support this form of specialised transport would be most welcome.
Environmental adjustments are best informed by specialist staff (i.e., physiotherapists, occupational therapists, and speech pathologists, as well as academics with special education** qualifications). Specialist academics with disability-specific knowledge and experience of the functional impact of the disability will be invaluable in supporting the individual needs of each student and to explain use of various support technology to their HDR supervisors.
**Special Education is the practice of educating students in a way that accommodates their individual differences, disabilities, and special needs. This highly specialised field involves individually planned and systematically monitored arrangements of teaching and assessment procedures, adapted equipment and materials, and accessible settings. Academics without specific qualifications in this field tend to focus on a wider category of difference – for example, human rights issues, gender equality and ethnic diversity – whereas academics with special education qualifications have first-hand experience of, and can instruct on, a range of different approaches to teaching, assessment, the use of technology, and techniques for accommodated and adjusted education for students with disability. These aspects of support are designed to help individuals with disability achieve a higher level of personal self-sufficiency and success in university and in their community, which may not be available if students were only given access to a typical classroom education.
What is cerebral palsy?
Cerebral palsy is a group of disorders, originating early in life, and is a lifelong disability that affects movement and posture. The impact of cerebral palsy will vary for every student and is characterised by variable motor impairments. It can range from minimal to considerable levels of physical disability. Some students with cerebral palsy may experience involuntary motions or erratic movements, while others may have difficulty with balance and coordination and/or fine motor skills. Students may require the use of specialised equipment such as a wheelchair or walking frame or assistance to walk. Students with cerebral palsy may present with a communication disorder, vision and hearing impairment, sleep disorders, and/or associated epilepsy. Cerebral palsy should not be viewed as a singular diagnosis. It is best to consider the term ‘cerebral palsy’ as a descriptive label based on a broad range of presentations that include type, severity, and various limb involvement. For further information, see Tait, K. (2022) ‘Supporting Students with Physical Impairments’, in Hyde, M. B., Dole, S. & Tait, K., Diversity, Inclusion and Engagement. 4th edition. Melbourne: Oxford University Press. (pp.328 – 360).
Reference: Tait, K., Bizan, E., and Johnston, A. (forthcoming). ‘Investigating the experience of Australian parents accessing NDIS support for children with disability. What has proved helpful and what are the barriers?’ Special Issue “New Horizons in Disability Law: Challenges and Opportunities for Persons with Disabilities in Post-pandemic World” in Laws.
Acknowledgments: Text by Adam Johnston and Kathleen Tait. Photo courtesy of Kathleen Tait. Banner image by Shutterstock. Post edited by Karina Luzia.