Falling into illness, falling into advocacy4 min read
By Hannah Pretious
My name is Hannah, and I am currently working on my Bachelor of Arts in Gender Studies and Anthropology. I started as a policy intern at CCS Disability Action at the beginning of November, 2020. This has aided in further aligning my personal experience as a young disabled person and my academic interests in power dynamics in society and relationships.
I always say that I fell into enrolling in my Bachelor of Arts, as it was far away from my plan of studying anatomy and becoming the next Jane Goodall. In many ways, the same could be said for my journey into disability advocacy and this internship in disability policy. This internship has meant that I’ve learnt a lot about what activism in the disability sector looks like and how we engage with ministries and different groups. I have also been able to connect disability groups that I am involved in with the work carried out here in the CCS Disability Action policy team.
In 2017, while studying at university in Dunedin, I became acutely unwell. Very quickly, my plans went from completing my degree and starting my honours year; to being hospitalised and having to move back in with my parents across the country. I felt my independence slip away. It was a shock. I felt like I was falling down the Alice in Wonderland rabbit hole into a world of unknowns.
Four years on, my daily life includes my medical needs, and those needs change the way I can access the world around me. This means that I now use the word ‘disabled person’ to describe my experience of the world. In disability theory, this aligns with the social model of disability, which conceptualises the disability a disabled person experiences as largely caused by their social environment. The more inaccessible an environment is, the more disabled a person is. This is in comparison to the medical model of disability, which says that disability is the result of the person’s impairment.
I am often asked: “Aren’t you too young to be disabled?”
My age plays a significant role in how I identify myself as a disabled person. I am only 24, and ‘invisibly disabled’. Invisible disability is a disability that is hidden or not immediately apparent. I live with multiple invisible impairments that are both mental health related and physical. My days centre around a complicated world of medication and appointments with doctors and different therapists. My chronic illnesses are not something that flare periodically, but rather, are a part of my regular routine – just like having to brush my teeth. I am now very used to this weekly routine and have also been able to add in part-time study and a range of activities outside of University. I am much more than my disability. I am also very lucky in the support I receive from my fellow disabled students.
Disabled people like me account for about six percent of the tertiary student population, and this percentage is growing. According to the statistics on the Education Counts website, from 2010 to 2019 the percentage of disabled students in tertiary education increased from 4.9% in 2010 to 6.9% in 2019. This increase is positive to see as it shows more students with disabilities are accessing tertiary education. It also leaves you wondering why these percentages are still so low. What discourages disabled students from accessing tertiary education? Is it about a lack of support? Or a culture of ableism in academia?
Being a young disabled person with invisible impairments is a unique way of experiencing disability. I do not fit the stereotypical images around disability. I found that it was hard to access help because I did not know who to ask. I have found support with fellow disabled students whom I met through the University Disability Study Room. I became part of a community of fellow classmates all navigating being a disabled student. We laughed and bonded over our shared experience and gave each other advice about things we had learned during our time in study. We wanted to be able to formally give a voice to disabled students by being disabled students ourselves. So we started the Otago Disabled Students’ Association in 2020. We all brought to the table different skills and experiences, and our executive committee is made up entirely of disabled students. We want to show that there is not one experience of disability. We are a group of strong and intelligent young people who all want to have the same positive, exciting student experience as everyone else.