On Tuesday 24 September, I was invited to speak at the launch of Sydney University’s Disability Inclusion Action Plan. A number of esteemed disability leaders spoke at the launch – Doctor Ben Gauntlett (Disability Discrimination Commissioner), Doctor Sheelagh Daniels-Mayes and Professor Jennie Brand-Miller from University of Sydney, as well as Vice Chancellor Michael Spence who concluded the launch. Ben in particular talked about the importance of universities “having a critical role in changing the mindsets of people with disability”, and how important universities are at making people feel proud and connected. You can read the Disability Inclusion Action Plan, as well as the implementation plan, on the University of Sydney website.

I was so excited to see some friends in the audience – Sarah and Sarah who I know from blogging back in the day, and Robin, who is a talented writer and activist.

Thank you to the many people who helped inform my speech – those who responded to my call for stories of disability in academia on social media, and also to Elisha for collating the research. And thanks to the University of Sydney for asking me to speak.

Here is my speech.

I acknowledge the traditional owners of the land, the  Gadigal people of the Eora nation – the traditional owners of the land. I pay my respects to Aboriginal elders, past present and future, extending my friendship to those who are in the room today. I am thankful to Aboriginal people for looking after our land so well – your care allows us to work and play on it. Thank you for sharing your traditions, stories, art, culture and wisdom with us. Sovereignty was never ceded and treaties have never been signed. This is stolen land.

Furthermore, I recognise past and present leaders in the disability rights movement – thank you for paving the way for our freedom and equity. Some of you are in this room today – thank you Ben, Sheelagh and Jennie for your words of wisdom. I’d also like to recognise my privilege, because many disabled people aren’t afforded the same opportunities as me becaue of physical, attitudinal, systemic and financial barriers – and they should be.

Just a note on language – I use the term disabled people – because I see disability as part of my identity. If you feel more comfortable using people with disability for yourself and others, that’s ok too.

I believe disability creates a community and culture among those of us who are disabled, and disability contributes to society’s culture, too. So many people avoid the term disability, or disabled, but doing that denies us of our identity and culture. I am absolutely ok with saying the words disability and disabled – they’re nothing to be ashamed about, they’re not slurs. #SayTheWord

I also believe in the social model of disability – it’s recognised by the United Nations, is human rights based, and focuses on environmental and attitudinal barriers as being disabling, rather than seeing a disabled person’s body as a deficit. I note that while the barriers of the social model were addressed in the University of Sydney’s DIAP, it wasn’t named. 

Congratulations on the launch of the University of Sydney’s Disability Inclusion Action Plan, and the achievements that came from the previous plan. Its exciting to see the way this plan will help break down barriers for disabled people working, studying and living on campus. It was especially exciting to hear Jennie say that some old buildings have been modified to comply with the Disability Discrimination Act – as the late great Stella Young said, “the human right to access is more important than the human right to nostalgia”.  [Quoted by Nelly Thomas in her eulogy for Stella Young, December 2014.]

I began my undergraduate degree almost 20 years ago. I really wanted to study journalism but my unpredictable health and the high cost of living away from home meant I couldn’t move from a rural city to a big city – yet. I did a Bachelor of eCommerce at La Trobe University in Wodonga. While I didn’t enjoy my degree, I graduated with some new knowledge and skills that allowed me to get a sensible and stable job in the government which lasted around 15 years. The best thing about my undergraduate degree was the friends I made – many of whom are still very close today. I made friends with Ben, because he asked me and another small girl to carry his beer up the hill at O Week. I did, and complained all the way. And Amber, the only other person I know to talk as much and as fast as me, and I told her to please be quiet in the computer lab because I was actually trying to work. We hit it off then. I catch up with them when I can – we all live busy lives in different cities.

I also didn’t identify as being disabled during my undergraduate degree, even though I had the rare severe skin condition Ichthyosis from birth, and I missed a few lectures due to hospitalisation because of severe sickness related to my skin. More on identifying as disabled soon.

During my undergrad I studied a law subject. Others were convinced I’d be good at it because I was good at English. But missing lessons and not being able to do group work because of a stint in hospital meant I failed the assignment, and I had to re-do it. I didn’t even think to ask for special assistance, I was finally not being treated as different from my peers (compared to at high school), and I wasn’t about to single myself out then. 

 I went to university again when I worked at the government – I did a Master of Communication at RMIT in Melbourne. I loved it because I had longed to study journalism since I was 15, and I was just so interested in the subjects. There were no exams, and certainly no accounting or law, and I didn’t fail any subjects. 

I signed up to the disability liaison unit – I finally started to realise that I might need help – though disability was not my identity then. I called on the DLU when I was sick and in hospital. They never connected me with other disabled people though, and in hindsight, I would have loved that. 

I took six or seven years to do my masters, because I worked full time and managed my health. I enjoyed my studies and was appreciative of the support I received. It was a long time doing a 3 year course but I wouldn’t change it. 

I started a blog mid way through my masters, taking writing seriously. Some of my blogging friends are here today. I wanted to develop a portfolio of work so I could work in the media. Well that escalated quickly. I was soon writing for the media – starting with a government website and then other news websites . When I did my masters thesis, I wrote about how blogging gives people with chronic illness a sense of identity. 

I first began to identify as chronically ill and disabled when I mentored young people at the hospital in my mid twenties, a few years into my masters. They all had different chronic illnesses, and despite our diagnoses, we experienced the same barriers – time off school and work, impairments, physical barriers, lots of different doctors, and of course discrimination. I realised I too am chronically ill, and disabled, and that it’s ok to identify as such.

As I wrote on my blog and for the media more and more, I got to know myself, and learn about my disabled self, and other disabled people. I auditioned for a spot on No Limits – a disability led community TV show. It was a blast – again I learned about disability politics and pride, as well as interview skills, production skills and thinking on my feet – but I never mastered the auto cue. We had support workers through the day, but it was the building that was the biggest barrier for our cast and crew. No Limits was filmed at RMIT University. One of our cast members could only go to the toilet before and after the filming days – which were often 6 hours long – because the university didn’t have accessible toilets. She went to travellers aid at the train station, where the toilet had hoists, and she had assistance. 

I occasionally lecture at Melbourne University, in a genetics class. I know, I’m not even a doctor! I talk about living with a visible difference, and also the media portrayal of rare genetic medical conditions.  I work with the head of genetics at the university and the Royal Melbourne Hospital, as well as some other staff, to deliver a yearly lecture. The students will one day work in the medical field, so it’s important they hear lived experience from actual people with genetic illnesses. 

I’ve done this for the past seven years. I had started off doing two half hour lectures a semester, but now I deliver the two over an hour due to work commitments. Generally it’s been great, but I’ve had two difficult moments that stuck out and made me realise how difficult it is that my own story crosses over into my work. They’re relevant for today. 

The first time – the Doctor set the scene by telling the students to communicate respectfully with patients who have visible differences, and then introduced me.  I talked about how life with a genetic illness and visible difference is not a tragedy, talked about intrusive questions, other people’s fear of our faces and my time on You Can’t Ask That. It was a lot of fun and the students seemed to respond well. 

Afterward, as I was packing up, with great irony, one student quietly asked me a very intrusive question. “If you decide to have children will you delete the gene or not go ahead with the pregnancy?” I told her that while there is genetic testing and selection, this is an example of the very intrusive and personal questions I get asked. The Doctors were surprised she asked me that, and said it made them realise the level of privacy that’s lost when living with a visible difference.  (A person without a genetic condition or disability is less likely to be asked about their pregnancy plans.) 

The second time, the year after, I gave my first one hour lecture. 

Again, the irony!

I was not able to stand giving my lecture for an hour. The course assistant (a medical student in the class) found me a stool.

“Oh no, you can’t use it”, he said.  

The stool  had a piece of paper taped to it. 

“This stool is for a mobility impaired academic only”. 

“I am a mobility impaired academic. I’ll be talking about the assumptions made about visible and invisible impairments today.”

It was awkward.

I really hope I helped shape the way they start their medical careers.

But that’s the thing. People don’t see disabled people in leadership positions. They don’t often see us presenting the news or performing on stage. They don’t see us as more than inspirational or objects of pity.

And they don’t see the diversity of disability. The two people who made my lectures awkward had probably never encountered a disabled academic, and expected disability to look a certain way. 

Because spaces aren’t built for us. Spaces aren’t built for us to lead or to teach, and even to learn. 

This lecture theatre wasn’t built for a lecturer in a wheelchair. Even students in wheelchairs can’t access the front stage should they need to present. A chair was not  on hand for people who cannot stand for long periods of time. The only option was to stand, and so it’s assumed that we have to be fit and able to deliver lectures. 

But we can sit. We can deliver lectures remotely. Hell,  most of my work is done in bed. I once gave a talk to chronically ill writers, giving them permission to work in their pyjamas, while I wore my pyjamas. They were so thankful. 

And I strongly believe that safe spaces – physical and attitudinal, backed by disability inclusion action plans like this one, benefit everyone. Make space for leaders in academia to feel confident disclosing their disability and using mobility, hearing and communication aids in the university setting, so students can see what’s possible for them. 

Because I haven’t been to university for a while, and I lecture occasionally, I asked my social media followers their experiences in academia. 

Dozens of, if not close to a hundred people reached out, including some from the University of Sydney. 

Commonly, students and academics cited the lack of compliance to access to premises standards by universities. Many recognise that these buildings in some cases are old but universities have laxed to make physical accessibility a priority. Both students and academics identified inaccessible buildings, lack of accessible facilities and disability parking as stressors to their participation. Even simple things like a space in the row for wheelchairs rather than forcing them to sit to the side in lectures are rarely accommodated.

It was noted numerous times that supports and adjustments that were commonly recommended at a basic level, were not afforded to those at a higher level. People who were attempting to complete a PhD found they weren’t supported in the same way that they had previously been. Many had been offered the suggestion of dropping out rather than being assisted to participate and achieve. In one case a student was moved to another class because a professor did not want to work with her. The general feeling is that the expectations and outcomes of people with disability are still quite low and so higher achievement is not supported.

Many students and also some academics, expressed that their peers were not often supportive and they were faced frequently with ableist comments and attitudes. Often to the extend that it deterred them from wanting to continue.

While there are facilities provided for students to attend classes remotely, these same facilities were not made available for participation in events. In particular one student noted that they were unable to participate in Disability Inclusion Week events at the university they attended because only physical participation had been provided for. They were perplexed as to why remote participation was not considered since it’s already available.

Many students applauded that their universities had finally, as recent as 2018 for most, developed a Disability Action Plan. They did note however that the plans were a lot of words and very little action. Unless they were able to self advocate and doing so loudly, their issues were not acknowledged and for that reason many fall through the cracks and drop out.

It was noted also that while there were supports in place to address adjustments for student participation the same was not afforded to the academics in being able to do their job. 

Generally people involved in academia whether it be in learning, or working capacities, expressed a recognition of progress for people with disabilities but admit there is still more to be done before equitable participation and inclusion is achieved.

One friend who is completing their PhD said:

“Behind every good leader there must be a good mentors who are collaborative and focused on collective growth.  It’s very rare for people with disability to find good respectful mentors who truly support growing and learning together and prioritise active support and access in action.  Too many people say they believe in inclusion, but then say access it too expensive, to time consuming, too distracting. 

The best teachers, educators I had as a student were the colleagues who organised large print materials, hearing access, captions without fail week to week, meeting to meeting.  They were also the colleagues who thoughtfully facilitated group meetings with access etiquette outlined and normalised and modelled to everyone.  They are the people who bring everyone along for the ride on access and inclusion, seeing it as a whole community effort and responsibility.”

I’m so grateful for those people for sharing their experiences.

One thing that’s I think is so important is making spaces for disabled people – both to lead and work, and to come together as a community, with other disabled people. I love Disabled Honi – the disability edition of the student newspaper, Honi Soit. It’s the second ever disability edition – created by disabled people, and filled with stories, art and resources. It beams with disability pride. More of this please. Finding the disability community is life changing and affirming. 

I’m excited about the University of Sydney’s Disability Inclusion Action Plan – it’s a clear commitment to making a more accessible and inclusive university. I’ll remind you of the objectives.

Objective 1. The University incorporates the rights and opportunities of people with disability in all policies and planning

Objective 2: The University of Sydney is a higher education provider of choice for all students

Objective 3: The University is an employer of choice for people with disability

Objective 4: The University’s communication and digital environment is accessible to everyone

Objective 5: The University provides an accessible built environment to everyone

Objective 6: The University provides leadership to the community in developing an inclusive Australian society

Disabled people helped create this plan that’s fundamental to inclusion. And this supports the disability community’s slogan – nothing about us without us.

Now it’s up to the university to walk the talk – or wheel the real – and implement the plan to create meaningful change for disabled people. 

PS: my next career goal is to do my PhD, and I can’t wait to return to university. 

Thank you for your time today. 

If you want me to speak at your event, get in touch with my speaking agent. And if you want to buy my book, Say Hello, you can find out where to here.