ADCET Talking Tertiary with Professor Sandra Thom-Jones

August 21, 2023 ADCET Season 3 Episode 2
ADCET Talking Tertiary with Professor Sandra Thom-Jones
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ADCET Talking Tertiary with Professor Sandra Thom-Jones
Aug 21, 2023 Season 3 Episode 2

The Talking Tertiary (TT) podcast series invites leading disability advocates from the community to share their expertise in supporting people with disability in tertiary education. We ask our guests to reflect on the changes they have seen in the sector and what the future of disability inclusion looks like.

In this episode of the podcast, we talk with Professor Sandra Thom-Jones. 

Professor Sandra Thom-Jones, who also goes by the moniker 'the Autistic Professor', has worked for many years in the higher education sector providing leadership, advice and support for research engagement and impact across university research. Her most recent role was as Provost for the Australian Catholic University.   

Sandra is now a Consultant who provides a range of services to support Autistic people and their families and friends, with a particular focus on autistic adults and services for workplaces, educational institutions and other organisations that want to create more inclusive and supportive environments for autistic people. 

In conversation with Sandra she provides tips on how everyone can provide more inclusive and support study and work environments to Autistic people drawing on not only her research and professional practice but her personal experiences as an Autistic person, and the mother of two Autistic sons. 

Sandra passionate and personal insights make this an important podcast for everyone to understand some of the little and big changes we can make in the sector to improve the inclusion of Autistic people!

Show Notes Transcript Chapter Markers

The Talking Tertiary (TT) podcast series invites leading disability advocates from the community to share their expertise in supporting people with disability in tertiary education. We ask our guests to reflect on the changes they have seen in the sector and what the future of disability inclusion looks like.

In this episode of the podcast, we talk with Professor Sandra Thom-Jones. 

Professor Sandra Thom-Jones, who also goes by the moniker 'the Autistic Professor', has worked for many years in the higher education sector providing leadership, advice and support for research engagement and impact across university research. Her most recent role was as Provost for the Australian Catholic University.   

Sandra is now a Consultant who provides a range of services to support Autistic people and their families and friends, with a particular focus on autistic adults and services for workplaces, educational institutions and other organisations that want to create more inclusive and supportive environments for autistic people. 

In conversation with Sandra she provides tips on how everyone can provide more inclusive and support study and work environments to Autistic people drawing on not only her research and professional practice but her personal experiences as an Autistic person, and the mother of two Autistic sons. 

Sandra passionate and personal insights make this an important podcast for everyone to understand some of the little and big changes we can make in the sector to improve the inclusion of Autistic people!

Darlene McLennan: Welcome. I'm Darlene McLennan, the Manager of the Australian Disability Clearinghouse on Education and Training. I want to welcome you to this limited series of ADCET podcasts, Talking Tertiary. The aim of this series is to engage a broad range of tertiary education providers, people working in the sector, senior leaders, students with disability, and others that have input into the success of tertiary education across Australia and what the future of disability inclusion in tertiary education will look like going forward. Our guest speakers reflect on their previous and current challenges in supporting students and ensuring that participation of people with disabilities in tertiary education is as positive and successful as possible. 


In this podcast, I'm really excited to welcome Professor Sandra Thom-Jones. Professor Sandra is an autistic woman and the very proud mother of two autistic adult sons. She's an academic, author, artisan, an advocate for the inclusion of autistic people in all aspects of society.


Sandra is an author of Growing in to Autism. Sandra now works as a consultant providing a range of personalised services through her website, the Autistic Professor, but has had and spent a long career in academia as well and a number of senior management positions, which I'm sure we'll discuss. 


So fabulous to have you here, Sandra. Thank you so much for taking the time to reflect with us on your lived experience as well as experiences that you've come across that I'm sure that you've actually heard the lived experience from many students as well. I know that you've left your senior management roles, but you have a new role as a consultant. Tell us a little bit about that and why you love what you do.


Professor Sandra Thom-Jones: Thank you for having me on the series. I'll start with how I got here because I think that that's probably important to why I love what I do. As you mentioned, I'd been working in senior roles in the university sector for quite some time. I was working in a provost chancellor role enjoying what I was doing. I was working in the research impact area and feeling like I was making a difference in the university sector. But like all academics, we make little incremental changes and we do things that influence other academics and other people in our disciplines. Then I published an article in the Sydney Morning Herald, which was about just something that had happened on a plane, an aside comment that someone had made about autistic people that was quite derogatory. It was the first time that I had really publicly acknowledged the fact that I was autistic. My colleagues knew and obviously people around me knew, but it was the first time that I'd made that very public statement.

I was just amazed by how many calls and emails and letters I got from people in the sector saying, "Well, thank you for that. I'm autistic, but I haven't disclosed. It's good to see that there are actually people in senior leadership." So that really started me thinking about why aren't we visible. 


I did a research study on the experiences of autistics in academia in terms of their experience in higher education of students and their experiences in academics. 37 autistic people from around the world published a few articles from that. I've got a book that I'm working on. They all revealed real struggles throughout their studies and throughout their employment in terms of barriers and challenges that they've experienced in higher education. The majority of them hadn't disclosed their diagnosis because of stigma, because of risks associated with it. I found myself doing a lot of mentoring in my spare time, mentoring academics, mentoring students at my uni, at other unis, and then getting asked to come and do PD sessions in my spare time for various universities, for teaching staff, for library staff, for administrative staff about how do we support autistic students.


From the perspective of an autistic person, what would actually help? Then I took some long service leave and started doing more of that stuff in my spare time and realised that that was what was really important. I could keep climbing the career ladder and I could go further into leadership, but I was really excited and passionate about being able to stand up there and talk to people about, how do we actually make our universities more inclusive? How do we make an environment where our autistic students can actually thrive and do well and our autistic staff can thrive? So many people have said to me, "Well, why don't you just do that for a living? Why don't you set up a consultancy?" So I thought, well, why not? So I didn't go back from my long service leave and so now, that's what I do. I offer services to organisations in the education and healthcare sectors, particularly higher education, university-types around looking at things like their policies, program development, what things can we do to make universities more inclusive, professional development for staff, and also services for individuals and families.


So helping students prepare for university, helping PhD students, researchers, teaching staff with that career mentoring and how do you actually establish yourself as an autistic person in academia and navigate through the system. And I'm loving it. The feedback I get from people around the impact that has on their career and their confidence in themselves is just so much more rewarding than writing another paper or going to another meeting.

Darlene McLennan: That's brilliant. Thank you for that. This podcast, we're focusing on how leadership can influence change in organisations to improve tertiary education experience, but in there that we certainly want to hear from the student, the student's voice. Can you reflect back at the time when you were a student within a tertiary education sector and what things helped or supported you in ensuring that you succeeded within your studies?


Professor Sandra Thom-Jones: I was a student a long time ago. Not many people know this. I'll tell you. I dropped out of school when I was 15 and I didn't actually go back to university until I was 21. I now have six university degrees. I love learning. I love gathering information like lots of autistic people do. I did not love university for the same reason that I did not love high school. At the time that I went to university, I didn't know that I was autistic. I knew that I was different. I knew that I didn't learn the way that other people did. I found the university environment really hard. The physical sensory environment was exhausting, the lights, the sounds, all of the things around me. I found the social environment confusing and complex, the social norms, the rules, the how do you talk to lecturers and tutors and all of those things. 


I struggled with understanding subject outlines, with understanding assessment criteria. I would do some assignments and I would do brilliantly well and I would do other assignments and struggle to pass. I really struggled with group work and the way that group work is actually so much a part of so many university courses and assumes a certain set of social skills and a certain way of engaging that's quite alien to a lot of autistic people and a lot of people with other disabilities. I found university really hard. I say that because then I fast-forward on to 30 years, two adult sons who were autistic and went to uni and I thought when my boys go to university, it's going to be so much better. The world has learned. Both of my boys had a diagnosis. University system, it's going to be so much better. Sadly, I found that it actually wasn't and that's a big part of why to me, the advocacy space is so important. The physical environment was still horrible.


The social environment, the lack of awareness and understanding among staff, among peers was still there. So much of the way that learning is designed, it's really not flexible. It's really not designed for people with a disability. It's very much around this is the way we do it and if you can't do it this way, you probably shouldn't be here and really not recognising differences, not just in the sense of challenges, but also not recognising differences in terms of strengths. I think there's a lot that can be done to make it much more accessible. But having said that, as I said, I love learning. I love the information and I think that's the thing that is really, really important that because we may struggle with some of the environmental aspects or some of the structural aspects, doesn't mean that we don't have so much to gain and so much to give in the university environment.


Darlene McLennan: That's so true. What advice would you give to a student embarking on a university journey, especially a student on the autism spectrum? What are the key things you could suggest to set them up to succeed?


Professor Sandra Thom-Jones: I would say prepare. Do your research early. Find out as much as you can about the university that you're thinking of going to, what services do they provide for students with a disability and particularly the specific disability that you have, but also more broadly, research. Make use of available tools and resources that may not necessarily belong to your university but might be publicly available. There are some great resources and guides there around preparing for university that are not necessarily given to you by school or given to you by careers advisors but are out there, things like special considerations. One of the things that is really, really frustrating is you enrol at university and you register with disability services, but then by the time you actually have your appointment and you go and you talk to them and you go through that whole process of getting your EIP and your special considerations, you're halfway through first semester or you're halfway through second semester. Do those things early. Talk to other students with similar situations to yourself, doing the same course, having a similar disability, having similar needs. What have they found helpful?


Getting to see disability services early. Really do as much as you can in advance. Be a pest. Find out what's available. I know one of the things that really helped with my youngest son was organising for him to actually go and sit in on a couple of classes the year before he started uni so that he actually knew what to expect when he got there, because I know for autistic people, that uncertainty is really a big issue. So he knew that this is what a lecture looks like and feels like. This is what a tutorial looks like and feels like. This is where the cafeteria is. Ask what services are available. Yes, they have orientations and open days, but really for me as an autistic person, I don't want to go to open day when the university is packed and crowded and noisy and there's a carnival wheel going and there's people running around giving out ice creams and singing songs. That doesn't give me a sense of what university is going to be like. I want to go and see what it's like on a normal day. What does it look like?


So do that research. Find out as much as you can about the experience. Make those contacts, but also really be prepared to advocate for yourself and be prepared to find other people that you need to advocate for you. Because advocating for yourself is important, but it's also tiring. So knowing what you need in terms of whether it's your parents or whether it's health professionals or whoever it is that you need in your corner, make sure that those people are there and they are available to you and that they also know how to navigate those university systems.


Darlene McLennan: Yeah, that's a good call. A lot of that was great ideas for students on how to prepare for that journey to further education. A lot of those things, I think, tertiary providers can reflect on and also implement. But is there anything like one or two significant things that you think tertiary providers should do or can do to ensure the success of students with disability?


Professor Sandra Thom-Jones: I think there's hundreds, but you've asked me for one or two, so I'll stick to two. The first one, I'll give you a bit of a story. As a young mum, I have this child diagnosed with a disability and I go to the department that you go to for all things. They say, "What do you need?" And I say, "I don't know because my child's just been diagnosed with this disability. I don't know what I need. You're the experts. Can you tell me what you offer?" They say, "No, it doesn't work like that. You need to tell us what you need and we'll tell you if you can have it or not. All right?" I don't know what I need. That is exactly what we do for students. We say, "Come to us on day one at university and tell us what you need. Go to your meeting with disability services and tell them what special considerations you need."


Now, you're new to university campus. You don't know. You don't know what the lecture's going to be like. You don't know what the assignments are going to be like. You don't know what the campus is going to be like. [inaudible] always say, "Go to your healthcare provider and get them to make a list of what you need." But they probably haven't been on your campus either. So for me, so many students that I talk to say to me, "Oh, and then I found out in third year that these other students have X, and gosh, if I had had X from first year, it would've been a game changer." My number one thing, don't make students guess what they might need. We know as educators what other things. The simplest thing we could do is provide them with a really nice, long detailed list. Do you need these things? Tell them what university's like. Tell them what other students needed and actually help them navigate that so they don't find out halfway through their course that there's something that would've made it easier for them. So that would be the first thing.


The second thing, and I'm sure that everyone says this, but I don't understand why they still don't do it 30 years later, think a lot more creatively about how we assess skills. We still pay a lot of lip service to saying that the way that we assess students is based on practical things when it's not, the fascination with group work. I particularly find this when we are teaching students in healthcare professions. Understand why group work is important and valuable. But we're training students for the real world. The thing that I always try to remind educators is that the group work that you want me to do in a class is not the same, is never going to be the same as what I do in the real world. I, as a provost chancellor for many years and prior to that as the director of a large research centre, I worked in groups. I worked in large collaborative teams.


I was good at group work, achieved success in my career working in groups, but what I was never expected to do was to be sitting there and suddenly allocated to a group of people I'd never met before and told, "Here, go work with these people you've never met before." The outcome is super important. Half of them actually don't care though because they're happy with pass and two thirds of them are probably not going to turn up and they're probably going to want to do the group work in the pub, and they're all going to have separate sets of rules. But that's what group work often looks like in uni courses. So if we're saying we're making students do group work because it's preparing them for the workplace, make it look like the workplace. If we're saying they're doing presentations to prepare them for the workplace, make it look like the workplace.


I don't think we are very creative. We say to students, "We're making you do this task because it's training you for your career," and it isn't. We're making you do this task because it's the way we've always done this task and we haven't actually thought about other ways that we could creatively assess you. So I think that would be something that, to me, I would really seriously consider.


Darlene McLennan: Thanks for that response. Moving on to the next question. There is a lot of work starting to go into the adoption of universal design for learning in the tertiary context and its application for all students. One of the things that I think the sector are reflecting on and the question is, do you think there is a risk that expertise relating to disability in tertiary education settings could be lost and that maybe isn't encapsulated in the UDL responses?


Professor Sandra Thom-Jones: I think that is a real risk. There's a lot of benefits to UDL. I'm a big fan of a lot of the recommendations and a lot of the things that are happening in that space because so much of what we could change would help everyone. When I think about some of the things that I've been talking about around assessment processes and subject outlines, a lot of things could change, could benefit everyone, but there are also a need for individual responses to individual issues of concern. I think one of the things that does trouble me is that if we say, "Well, we've had this very comprehensive UDL approach. We've done all this, so everything's fixed," and so then an individual student comes up with a problem that's related to their specific disability, their specific way of being in the world and that doesn't get dealt with because what we've done, this universal thing, so everyone's okay. And also because we've done the universal thing, we really don't need people who are experts in your specific disability.


I find that, even now when I talk to people in disability services and you say, "Well, okay, so who have you got that actually has specific training in autism or specific training in ADHD or specific training in whatever it is?" I know. We've all done a disability course, but each of those disabilities is slightly different. Whilst universal design will help with a lot of those aspects, there are always some specifics. To give a really, really specific example, one of the things that we did at my previous university was we set up low sensory rooms for our autistic students on campus because of just that overwhelm of the sensory environment. Then the issue was raised by some people, well, lots of other people would benefit from those. Lots of other people would like to use those rooms. That's universal design, isn't it? Everyone can use the room because everyone's got sensory challenges, but then that neglects the fact that there's another purpose for those rooms for autistic people, which is that unfortunately, we live in a world that stigmatises a lot of our natural behaviours.


One of the things that autistic people or a lot of autistic people do to cope when we're overwhelmed is we do engage in repetitive behaviours that help us calm, that help us regulate. We live in a world where those behaviours are seen as odd by other people. I know I can go into the sensory room and if I need to flap my hands or I need to move in a certain way to regulate, I can do that in that room because only other people in there are people who understand me and people who are like me and I'm not going to be made to feel uncomfortable. But if we say, "Oh, it's universal. Anybody who needs a break from the bright lights can go in there," then suddenly I'm in this environment that is hostile and it's full of people who don't necessarily understand me, that I don't feel comfortable around. They might all come in and spray perfume because yes, the lights bother them, but they actually like the smell of perfume. So that universal thing becomes an issue, so I do think there's that concern.


The other thing that I worry about specifically with autistic people is many of us have executive functioning challenges, so difficulty with organising and structuring things and with making choices. One of my concerns with UDL is when you've got multiple ways of doing things, so there's multiple choices for engagement, multiple choices for action and expression, those things are great, but as an autistic person, I'm going to need some guidance and some support in making those choices or I could just be totally overwhelmed. I may already feel overwhelmed when I'm told I can write an essay on any one of these four topics, but then if I get an assignment that says I can write an essay or make a video or make an audio, unless someone is actually going to help me refine that down into what's the best choice for me with the skillset that I've got, then in some ways that could actually make it harder. So I do think there is need for some caution.


Darlene McLennan: And that's great. Very wise words there. I think we might just have to pull that one out and actually showcase that in our UDL area because I think that really encapsulates some of the challenges that can exist with the UDL framework, but also some of the positives that can happen too. So thank you so much, Sandra, for that response. In recent times, we have a new government for the last year that's actually very much focused on improving access and participation to education. We've had the [inaudible] area announced free places within TAFEs across the country. We currently having a process that the higher education called the Accord, where they're looking at access and participation for a whole heap of diversity, what they're calling priority cohorts and other things that can influence the uptake of higher education in the sector. And that's based really on that the government are predicting that nine out of 10 future jobs will require, or I think actually they're not even saying future jobs, they're saying the jobs now that are being created require a tertiary education.


So the question is how can we help leaders to understand how important it is to invest in tertiary education for people with disability in the same way that they do for schools or even our disability employment sector? I suppose what I'm referring to is often the National Disability Insurance Scheme, for instance, has an employment strategy, but they don't have a tertiary education strategy. We don't have a government that has a tertiary education strategy around disability. So it's that kind of, how do we ensure that tertiary is at the forefront of government and their policies?


Professor Sandra Thom-Jones: That's a big question and such an important question because it goes to a really widespread, huge societal issue of stigma and discrimination in relation to people with disability. There is this perception that we should just be happy if we get a job. If we are provided with just enough support to help us get a job doing anything, then we should feel fortunate that there is nowhere near enough focus on the fact that people with disability are people and they're not solely and only defined by that disability. We have skills. We have assets. We have strengths. We have so many other things. I look to some of the research that we've done around public attitudes and perceptions of autistic people. You ask people what jobs can autistic people do and it's really disturbing the proportion of people who think that we can't do certain things like we can't be teachers. We can't be doctors. We can't.


It's because there is that stigma and there is that perception that this is what I think that person with a disability looks like and this is what I think they're capable of. And it's such a massive waste of skills and expertise that it's really criminal that our government, the NDIA, the government more broadly, our education sector isn't saying, "Hey, we're talking about almost one fifth of our population here," and we're saying, "Oh, let's not bother educating them. Let's just either leave them at home or give them the jobs that nobody else wants." It's just criminal. I think we need to address those societal issues that underpin that. The people think that's okay, that people without disabilities aren't walking around with placards outside Parliament House saying, "This is ridiculous. This is unfair. Why isn't the NDIA pushing for every person on the NDIS to have a tertiary education? Why are we not putting quotas on our universities that they should have a fair representation of people with disability in all of their courses?"


I see it in our tertiary institutions as well. I do talks sometimes to faculties and I have people say to me, "Oh, yes, but we wouldn't get..." Obviously, my focus is predominantly on autistic people because that's what I do, but they'll say to me, "Oh, yeah, but we wouldn't want to be bringing more autistic people into healthcare or into nursing because they're not really suited here." Well, they are. I tell you. Because when I get sick and I go to hospital, I want an autistic nurse or an autistic doctor or an autistic OT because I want someone who actually understands me. I know that that person is going to serve my needs better than someone who isn't autistic. We don't see those sides of people and I think that that's what we really need to do. The government does what society pressures the government to do and I think we set a really low bar as a community for what we want our government to support all of us to have fair access to.


Darlene McLennan: Thanks, Sandra. Now reflecting on your new role, how do you feel that can influence and improve disability inclusion in the tertiary education sector?


Professor Sandra Thom-Jones: I've been a student with a disability. I've been a parent with students with the disability, a teacher, a researcher into disability issues, an advocate, a university leader. So I've got a range of different perspectives on the issue of disability inclusion in tertiary education. I've found that I've been able to make little inroads working in a single institution. In each institution that I've worked in, I've been able to do things that helped students and staff in my institution, but that's limited. One of the things that I've found really frustrated me, each time I went to set something up, I would look around what was happening at other institutions and I would see great things, but they were rarely led. Disability programs are rarely led by people with disabilities. So I did a pretty thorough review of autism inclusion programs around Australian and international universities and there are some great ones, but they're all set up by neurotypical people.


That means that they're coming from an outsider perspective. If you don't have autistic students driving the programs for autistic students on their campuses, you're never going to fully understand the issues that those students face. When I set up a program at the university I was working at, I actually talked to the students who were there. What are the challenges you find on this campus with our courses, with our ways of working, with our policies, with our procedures? What do you as a student with disability find challenging? That, I think, is really important and that's what I want to do in this role is actually go into universities, into other organisations with that insider perspective. I am a person who's had this experience as a student. I can talk to students more comfortably and more openly because there's that shared language, there's that shared understanding.


When an autistic student says to me, "Oh, the lights in this room are too bright," I know what that means in a way that a neurotypical person doesn't because a neurotypical person says, "Oh, yeah, they are too bright, aren't they?" Another autistic person knows that what you mean is actually, I can't think in here because it's too bright. There's that different level of understanding. The other thing that I find though when I do education and professional development sessions for university teaching staff is being able to do that as an autistic person rather than as a professional educator who's not autistic. You come from a different perspective and people can ask questions. I'm a pretty candid person. You can ask me anything. I'll stand up there. You can ask me anything that you might not want to ask someone else because I'm not going to get offended. I think you've got to have those open conversations.


So I'll give a talk and people can ask. Sometimes they do, they ask me the most appalling questions. I won't tell you what they are, but people will ask me. I think I'm so glad you asked me that because if you didn't ask me that, you'd walk around the rest of your life thinking that when you interacted with students. I think that's one thing that I can bring is that candour and that let's have those conversations. But also, and to me probably the most important thing that came out of so much of my research and so much of the mentoring that I've done with people, so many people are afraid to disclose. When we look at the proportion of autistic students on our campuses, it's so much underestimated because students are afraid to disclose because of the risk of discrimination. We have so many autistic staff on our campuses who are afraid to disclose.


I'm in a position where I can advocate. I can go in and I can say, "This is wrong the way this is set up. This doesn't work. It would be better if we did it this way." I can say that without risk. If I can make those changes as an outsider coming in and providing advice, make it a little bit more comfortable for autistic staff to stand up and say, "Hey, actually this is what I need for autistic students to feel, okay, maybe this is a comfortable environment." If that person there can actually get to where she's at and can be recognised for her expertise, maybe it is safe to say, "Hey, yes, actually I'm over here. I'm an autistic person too."


The most common comment I get from people, particularly from writing my book and publishing that and going doing talks about my book is the number of people who say to me, "It's made so much difference just the fact that you're there and you're visible and that I can see that you can disclose and you can say what I'm thinking and you can say it for me and then I feel brave enough to say it." I guess to me, that's the thing. That quote that you hear all the time, you can't be what you can't see.


Darlene McLennan: And the braveness that you've shown, it's going to enable other people to feel that they can speak and identify as well, which can be a very powerful experience for many people. So reflecting on that, what do you see are the current internal and external challenges facing tertiary education providers in supporting students who are neurodivergent?


Professor Sandra Thom-Jones: The biggest one I would say is the lack of understanding of autism and neurodivergence more generally and both challenges and strengths. We really have this pervasive stereotype about what autism looks like and what an autistic person is and is not capable of. As I said, for me, that's a big reason why people are reluctant to disclose, because as soon as you disclose a diagnosis, people will make certain assumptions about who you are, what courses you can do, how you're going to learn. One of the things is every time I go and I talk, people say, "Oh, yes, autistic students. Yeah, they're all in IT, aren't they?" Well, actually, they're not. The majority of them are in the healthcare professions. They're in teaching. They're in creative arts. They're everywhere. There are so many successful autistic people in so many different careers. So that lack of awareness, that lack of understanding and when you said to me before about what can I do in my role, for me, that's my life goal.


If I can just change that, if I can just make it so that people working in senior levels at universities understand that autistic people are diverse and have these skills and have these strengths, then my life's work is done. But what I see so much is this perception that either, well, sure they're autistic, but they're smart enough to get here so they don't need help. They got over the line. They got here. They got great grades. They got into uni, they should be able to cope. Or gosh, if they need that much help, why are they here? For me, that's where me being candid comes in because I can stand up and say, okay, I was a provost chancellor for many years. I held a very senior position. I've published hundreds of journal articles. I've had millions of dollars in research grants. I've done all kinds of serious things. I can't drive a car. I can't do the grocery shopping by myself because I get confused with the lights and everything happening and the noise.


I have strengths and I have challenges and those things coexist in me as a single person, and we don't have that awareness in universities. We don't see people with disabilities as a combination of strengths and challenges. We see one or the other. We see, okay, that person's really clever, so they must be able to overcome their challenges, or gosh, that person's got so many challenges, they shouldn't be here. For me, that's a big challenge facing tertiary education providers, seeing the holistic person. That's a combination of those things. The second big challenge is a lack of commitment to supporting people with a disability. A big part of that goes back to your earlier question about governments. Commitment goes where the money is. The university sector is a poor sector. We're underfunded for what we're expected to do as a sector. Over 17% of Australians have a disability, but universities are not set a quota of having 17% of their enrollment as people with the disability.


If that was a quota and that was part of what they got rewarded for, that's what they would do. I have been in so many meetings at very senior levels with people where I've tried to say, "Why doesn't this university have more disabled? Why aren't we even properly counting our students with a disability? Why aren't we doing more to recruit students with a disability?" And you get told, "Well, because the government's given us quotas for low SES and for various other things. So we focus on the things we've got quotas for because that's how we get funded." I understand the imperative for universities to do that because they have to get funded. But if the government said, "Well, actually, let's say that 17% of the population has a disability, so 17% of your university population should have a disability and we'll fund you on that basis," then I think that would solve a big part of the challenge for universities because suddenly, they'd find all kinds of creative ways of making the universities more inclusive.


Darlene McLennan: Yeah, brilliant. Yeah, it was interesting. The Interim Report for the Accord actually identified parity across the priority cohorts and the disability parity number wasn't there. So they didn't actually put the 17% or 20% that often identified. They left that blank, which was, yeah. So hopefully, there'll be some future work around that because in the paper, it actually identified that they're wanting to work with the universities of setting that parity number, but I think it's really important that we push and understand the need that, yeah, we do need to be on parity the same as the other equity groups. They've certainly identified those numbers. In that piece, I really love some of the things that you said in that answer around the challenging the assumptions. I think that's really important and to see the whole person. I think you had said you can't be what you can't see, but also, I think another often saying we say is that you've met one person with autism, you've met one person with autism. You can't just assume that everybody's the same, so I think it's really great for organising the tertiary sector to reflect on that answer.


Okay, we're nearly at the end, so thank you so much for your time and effort. It's been a long conversation, but a really fruitful conversation. It's been great getting your thoughts and guidance on how the tertiary sector can improve. That probably is that last question of that broader and bigger question of, what else can tertiary education providers do more broadly to improve disability inclusion as a whole?


Professor Sandra Thom-Jones: Yes. I do have a couple of final thoughts on that. Firstly, I would say stop seeing us as a liability or as a favour or a concession. Actually, start seeing our strengths and our contribution. Stop asking what do we have to do in order to make university accessible for people with a disability and start saying, "What's wrong with our university that people with a disability don't want to come here?" Because that's the real question. Because we know that there are so many people out there who are capable, academically capable of doing well at university and it's the social, structural, environmental barriers that we put up on our campuses that are preventing them. So that should be the question. The question should be, what's wrong with my university that all of those people with a disability are not knocking down my doors to get in?

I think that's one thing that we really need to do. We need to raise awareness amongst parents, schools, employers, the community, the government of successful people with the disability and address the stigma so that people are willing to disclose and visible. We have to raise children's aspirations. There's so much research evidence out there that school students with disability aren't even being encouraged to consider university. They're being told, "Oh, okay, well, you should think about maybe going to TAFE or maybe you could get an apprenticeship." But we really should be encouraging them to aspire to go to university. There's been some great work done in this space recently, particularly the work that Paul Harpur and Brooke have done around leadership in the sector. We should be making disability much more visible in our university sector. It's just appalling that there are not visible senior leaders with a disability. I'm not saying there are not senior leaders with a disability. I'm saying we have a sector where if you have a disability, you probably don't want to disclose it, and if you do disclose it, it's often a limitation.


So we need that. We need to have people with a disability teaching in our faculties, leading our universities, providing that role model for our students. A student is going to be far more comfortable, not only acknowledging that they have a disability, but also requesting the supports that they need and seeing those supports as acceptable and necessary and normal if they can see that their teaching staff and the leadership staff at the university also require those supports and considerations and are also recognised and valued for their skills and their strengths. We need the whole sector to value disability. We need to make it more accessible for students, but we can't just stop with students because otherwise what we're saying to the students is we want you to get a degree, but then we want you to go sit quietly somewhere else. We need to be saying this whole sector has so much to gain from this almost one in five segment of the population that we are currently excluding.


Darlene McLennan: Thank you, Sandra. That's a wonderful point to end on. You've said a number of things in there that we'll put links into our podcast page so you can follow that up to get more information about Sandra's research, her books. Also, just in that last piece, she spoke about Paul Harpur and his work with Universities Enable. We'll put a link in for you to be able to find out more information around that as well. So thank you, Sandra, for your time. It's a lot to take in and I really value and appreciate the thought you've put into your answers. I think they're pretty powerful and yeah, I think it's going to give many people food for thought. So thank you and wish you all the best for your business and your endeavour in the work you're doing now. We look forward to probably touching base in a year or two and see how you're going with it.


Professor Sandra Thom-Jones: Thank you so much. I really enjoyed talking to you today.


- ADCET is committed to the self-determination of First Nations people. We acknowledge the Palawa and Pakana peoples of Lutruwita upon whose lands ADCET is hosted. We also acknowledge the traditional custodians of all the lands across Australia and pay our deep respect to elders past, present, and emerging. Thanks for listening to this ADCET podcast from the Australian Disability Clearinghouse on Education and Training, supporting you, supporting students.

Tell us about your consultancy and why you love what you do?
Can you relect back on when you were a student and what helped and support you?
What advice would you give to student embarking on a university journey to help them succeed?
One or two things tertiary providers can do to ensure the success of students with disability?
Is there a risk of specific expertise relating to disability getting lost in the tertiary responses to UDL?
How can we help leaders understand how important it is to investing in education for people with disability?
Reflecting on your new role, how do you think that can help improve disability inclusion in tertiary education?
What do you see as the internal and external challenges facing tertiary providers in supporting neurodivergent students?
What else can tertiary education providers do more broadly to improve disability inclusion?