The research project I am working on was not previously established. I am making a literature review on the topic of neurodivergence, healthcare, and gender (specifically women and nonbinary people). My hope is that the impact of my literature review shows people who influence healthcare that there is a drastic need for reform in how we as healthcare workers view disability, both physical and mental, visible and invisible. I plan on sectioning my lit review by topics such as how diagnoses arose, how neurodivergent people have been treated in society over time, who has been doing the research/development of treatment throughout time, what disparities in healthcare services are neurodivergent people experiencing, how diagnoses have been rooted in bigotry (sexism, racism, classism, etc.), the evolution of “treatment”, and the current healthcare environment experienced by neurodivergent people. I think by integrating these topics into one piece, the problematic roots in which treatment, diagnosis, and social alienation has been formed. Remodeling care for neurodivergent people, through physical setting, communicational norms, and ideologically is the end goal of the movement I hope to contribute to through my research.
Right now, I am in the immersion phase of my project. I have been reading lots of #ownvoice texts (media made by neurodivergent people on the topic of neurodivergence). Recently I have finished the books Disability Visibility:First-Person Stories from the Twenty-first Century by Alice Wong, Emergence: Labeled Autistic by Temple Grandin, Asperger’s Children: The Origins of Autism in Nazi Vienna by Edith Sheffer, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman, and more. I have also tried to diversify the media I am consuming by including TedTalks, movies, poetry, academic articles, and documentaries. In addition to simply reading, I am taking notes, writing cross referenced discussion, and shadowing one of my mentors in the clinic.
I see research ethics playing a role in my project mainly through the population of interest. Disabled people are considered a “vulnerable group” in research. Although I am not administering my research survey in these ten weeks, making sure that I am choosing truly anti-ableist publications and reading all texts through an anti-ableist lens is important to preserve my ethical commitment.
I would love to hear a bit about how the WAGSFP research ethics seminar impacted the way you think about research ethics with your project.
-Emily
I think since so much of the ethical concern with my project is related to gathering the opinions/stories that belong to the group (Autistic people, not just parents of or people who work with Autistic people), the beginning of the seminar was especially important. Also, I really, really appreciated learning about the idea of a positionality statement. I want people reading my work to know that it is coming from the neurodivergent community, for the neurodivergent community. There is a lot of mistrust in neurodivergent research from neurodivergent people (which is completely understandable). I was really trying to think of how to professionally communicate my stake in the topic as well as my personal commitment to anti-ableist healthcare models and communication. Learning about a positionality statement really solved this issue.