I want to reflect the complexities of disabled people’s lived experiences and identities – and on our own terms, writes Michelle Walmsley.
Featured in a 1972 film called To Help a Crippled Child are images of disabled children playing and interacting with their families. They are also depicted in educational environments and towards the end of the film, a co-production between the New Zealand Crippled Children Society (now CCS Disability Action) and the National Film Unit, disabled adults are shown to be independent and gainfully employed.
These images of happy and well-adjusted disabled people are juxtaposed throughout against experts speaking directly to camera about disability to build an idea of life as a disabled person in New Zealand as grim and without hope unless an interventionist approach is adopted, facilitated by the CCS.
To Help A Crippled Child reveals societal attitudes of the time towards disabled people and is a clear example of how perceptions of disabled people have been shaped by a history heavily influenced by the power of those in authority.
As a disabled researcher of disability history, I am challenging these received notions. So many of our stories have been told through disability organisations, medical institutions and mainstream media, but I am studying these narratives to put their sources into sociopolitical and cultural context and understand them through a contemporary lens.
Although institutional narratives loom large in disability history, we can address the imbalance between them and disabled people’s own stories through methods such as oral history and autoethnography.
In 1999, oral historian Helen Frizzell interviewed disabled adults for the NZ CCS Otago Inc Oral History Project. In listening to these interviews, which are held at the Alexander Turnbull Library in Wellington, I have heard diverse stories that span decades and generations. They offer invaluable insight into the lives of disabled people in their own words, framed within the context of their experiences of CCS Otago over a span of 65 years.
I am also carrying out oral history interviews myself and in the process learning how we think about ourselves as disabled people within New Zealand society. An example is the language we use to describe and talk about ourselves. Although not all the people I interviewed would use the word “disabled” to describe themselves, they all appreciated that in public it can be useful to have a collective understanding of disability represented in language.
As a disabled researcher of disability history, my analysis of these sources and even the material I am selecting to analyse is bound to be influenced by my own experiences. For that reason, I decided early on that I would take an autoethnographic approach, meaning I would use elements of my own story to connect autobiographical detail with the political, social and cultural history of New Zealand since the second world war.
I was born at Hastings Memorial Hospital in 1980 with Spina Bifida and Hydrocephalus. I was born disabled. I’ve never known anything else, so my experiences as a person with a disability have shaped my life and worldview entirely.
Since I can remember, people have been telling me to write my own story, which I admit to resenting from a young age, although I couldn’t really articulate why. Talking to other disabled people as an adult, I have learnt it is not uncommon for disabled people to have regular requests to record our stories in some way. Many of us have done just that. It’s not our memoirs or autobiographies that are the problem but the ways in which abled people can expect access to our stories on their terms so the stories can be reshaped and reframed to fit preconceived notions of what it is to be disabled.
It was with some reservations, then, that I began using autoethnography as a tool. So far, I’ve learned a lot more about myself than I expected to. Perhaps the most important thing I’ve learned is that I am hard on myself because of my disability. Disabled people are taught from young that we must be able to do everything we can for ourselves instead of the more valuable lesson that it’s good and healthy to ask for help when you need it. The messages society teaches us about independence and not being a burden to others can be antithetical to our ability to thrive and can lead to isolation.
In my research, I am recontextualising stories of disability outside of a medical discourse in a way I hope will reflect the complexities of disabled people’s lived experiences and identities.
In the medical model of disability, our bodies are seen as defective and in need of fixing, to be made as “normal” as possible. In contrast, the social model of disability says we have impairments but are disabled by society. In my view, the social model continues to be a useful tool for understanding and addressing societal barriers and oppression but has also led to an abstracted notion of disability that doesn’t account for a lived experience of it.
One of the reasons I decided to research embodied narratives of disability in New Zealand is I have never felt completely comfortable with disability as an identity for myself and wanted to explore that discomfort. Through meeting other disabled people, in person and in the archives, I am learning that much of that unease has been distilled over time through a shared complex history and this is making me feel much more connected than I ever have in the past to my disabled self.
Michelle Walmsley is a PhD candidate in the History programme at Victoria University of Wellington. She will be talking at the New Zealand Historical Association Conference being hosted by the University 27–30 November.