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MAIS 602 - Research Journey

Brainstorming a Research Question

My initial thoughts on a research question lead straight to my intellectual passion of Neurodivergence in Females. This is a subject I have been studying for many years, and the reason that I decided to return to school. I have ADHD so for any project, I need to have a keen interest in the subject matter to produce enough dopamine to complete the task.

I would like to narrow down this subject matter into a how an aspect of neurodivergence impacts society. The sub questions that I have the most interest in are the ones that show why society should embrace neurodivergence, lead to a better understanding of neurodivergence, and ultimately destroy stereotypes and biases surrounding neurodivergence.

ADHD and Autism are my primary areas of interest, and these are two diagnosis that are often overlooked in females, which is why I have such a passion around this subject. I note that I do go into this subject matter with some presuppositions as I am neurodivergent and so is my daughter, therefore I have a difficult time with societies current pathologizing of these neuro-types.

A few sub questions that really interest me are:

Is it time for institutions (educational and public health) to stop pathologizing the language around neurodivergence?

Does the pathologizing of language around neurodivergence create societal biases and prejudice?

Why are females overlooked so often in the ADHD/Autism diagnosis process and is it related to the language used in the current DSM?

I have written about pathologizing language in relation to neurodivergence previously, https://lisasc75.wixsite.com/my-site/blog I am of the opinion that when it comes to equity, everything starts with the language that we use. Language, I believe, can be a powerful tool in creating societal biases, and therefore a powerful tool in creating equity.

If I break the questions down further to narrow my research, I am interested in Autistic/ADHD first-hand, lived experience on these subjects, and though I need to counter that with scientific studies, I would like my research to be from the perspective of lived experience with a view to creating a better understanding of neurodivergence as a result.

The result of whittling down the research question, and placing it from the lived experience perspective leads me to a final resulting question of:

How does the pathologizing of language around the topic of neurodivergence impact the lives of neurodivergent individuals?

Assignment 2

Reflective Response to Week 3/Unit 2

            My research question is, “How Does the Pathologizing of Language Around the Topic of Neurodivergence Impact the Lives of Neurodivergent Individuals?” After reading and discussing the readings in Unit 2, I would, for now, keep my question as it is. Before submitting this research question, I had done a fair amount of deliberating and the due diligence necessary to commit to this question. My chosen subject area combines my lifelong passion for language, and my overwhelming desire to change the narrative surrounding neurodivergence. While I feel that I have whittled down my research question to one that I am comfortable with, I would, because of the readings, forums, and feedback, change how I carry out the intended research.

            I have been studying neuro-divergence for almost a decade now, and it is a hyper fixation subject matter of mine. I am passionate about the subject because my brilliant daughter is autistic, and I have no intention of changing anything about her, but every intention of changing the way that the world views her, and other autistic individuals. I have changed almost every aspect of my life to be at AU and researching this topic. I am a late diagnosed ADHD’er, and academia is completely out of my comfort zone, but if I can do just one good thing for the neuro-divergence movement in this lifetime, it would be to change the language that we use to describe perfectly natural, neurological differences in humans.  This does of course mean that I have some attachment to outcomes in my research, and that is something that I will need to address so that my study does not lean towards my bias.

     I have often been accused of having a progressive attitude towards neuro-divergence, though I think that is because society in general has an antiquated view of the subject, and that view is perpetuated in the media, and the language that we use to describe it. Though it pains me to do so, I will use the very famous Autism Speaks organization as a negative example as to what wealth and media campaigns have the power to do to an already marginalized, and misunderstood demographic. Autism Speaks is a wealthy charity that continues to spread misinformation and spend money searching for a cure, and they support conversion therapies. Being autistic is a naturally occurring neurodivergence that does not need to be cured, only better understood. The perpetual insistence by Autism Speaks that being autistic is somehow less than being neurotypical has created much harm to the autistic community, and societies perceptions. Much like Paul Bowmans study of Using Theory as Method in Media and Cultural Studies: A Case Study: Orientalism and TV Adverts, I wish to use the Autism Speaks media campaigns to show how the pathologizing language used to describe autistic children in these campaigns has impacted not only societies interpretation of neurodivergence, but how these campaigns have impacted the lives and autonomy of neurodivergent individuals.

     The reading Reflexivity in Practice: Power and Ethics in Feminist Research on International Relations by Ackerly and True and the reading describing sensing policy by Wiebe were good reminders of the care that needs to be taken when working with communities outside of ones own. It is interesting to me that these readings of in-depth research on how to be sensitive, empathetic, and cognizant of ethnocentrism, and one’s own ego exist, as though perhaps we have become so detached from the basic principles of human interaction that we need to be reminded of cross-cultural sensitivities. When working with a neuro-divergent community I will need to be sensitive as to how data is collected. I will need to give many feedback options as in person may not suit autistic people, in writing and form-filling may not suit an ADHD’er, and gathering information verbally will not be possible for any non-speaking autistic people. There are many variables to consider and many forms of communication, and giving people options as to how they would like to participate is tantamount to being able to capture the sincerest data.

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Works Cited

Bowman, Paul. (2021). Using Theory as Method in Media and Cultural Studies: A Case Study: Orientalism and TV Adverts. Martial Arts Studies. https://www.youtube.com/watch?v=j3tKg88vyqs

Ackerly, Brooke. & True, Jacqui. (2008). Reflexivity in Practice: Power and Ethics in Feminist Research on International Relations. International Studies Review, Dec. 2008, Vol. 10, No. 4 (Dec. 2008), pp. 693-707 Published by: Wiley on behalf of The International Studies Association. https://www.jstor.org/stable/25482017

Wiebe, Sarah Marie. “Just” Stories or “Just Stories”? Mixed Media Storytelling as a Prism for Environmental Justice and Decolonial Futures. https://esj.usask.ca/index.php/esj/article/view/68333/pdf

Assignment 4.

Summary and Evaluation

In Unit 4 I presented Rebecca Coleman’s chapter Imaging. Coleman’s Imaging is a self-reflective writing focusing on her use of images to contribute to a research project. Sometimes reading theory, academic papers, and methodology can be dry, to say the least, but Coleman’s chapter was a nice change of pace to read something that was written with a distinct lack of ego, was honest, and accessible not only to academics. Coleman is not using images to collect data, but instead using images as part of the research methodology. Images are used to create stories or to gain insight into the participant’s mind. For this research process, there is no strict expectation of outcome, but rather curiosity as to where the images may lead.

In Coleman’s research project, she works with a group of female teenagers. Using various crafts and art materials, Coleman asks the teens to create images of themselves. The participants create images based on how they feel about their bodies. How teenage girls feel about their bodies is of particular interest to me, as I have a soon-to-be teen daughter myself. I recall in one of our forums this semester someone saying that perhaps the way females feel about their bodies has improved since the 1950s. However, I was a teen in the 1990s when Kate Moss and the emaciated “Heroin Chic” look was what we were all striving to achieve. Female beauty standards have, in my experience, only become worse since the 1950s because of Photoshop, Instagram filters, and unrealistic standards and expectations being in our handheld newsfeeds day after day. Add to this a bombardment of marketing, injectables, fillers, and plastic surgery and we have ourselves a crisis for teen girls (and women of all ages.) It will come as no surprise that the collages that the teens created for Coleman were filled with extremely negative self-portraits. These negative images are an indication that the teens' internal dialogue around their bodies is also negative.

         Coleman admits that she was not entirely certain what to do once the images were created, and after she had the participants describe the images to each other. Some of the teens became unable to articulate their thought processes verbally. Interestingly, some people can describe feelings impeccably using imagery, but not articulate the same feelings verbally. Also, art in any form is always subjective, and therefore open to interpretation. From a sociological perspective, the act of creating these images in a group setting, and in a safe environment, and discussing self-reflection freely, may produce a favourable result for the participants. The participants in this project would be able to understand that they are not alone with their negative thoughts about their bodies, they would be able to discuss where these negative thoughts may stem from, and therefore, rather than having a quantifiable result, in this brand of sociological research, the method may well be in the madness.

         I have mentioned before that when we share our stories, it invites others to share theirs. If we find enough commonality between people’s stories, then that can lead to a theme, and that theme can be used to insight societal change. I wonder if we focus too much on outcomes in academia, and we worry about science so much that we may be missing the original intention. What if we were to allow ourselves the freedom to be open to interpretation with our research? To being as subjective as art in our processes? I don’t know the answer, but I am certainly inspired by the idea of the process being the focus, rather than an anticipated result.

         After reading Coleman’s Imaging, I tried to think of times when imagery has had an impact on my life. I realize now that imaging plays a crucial part in my day-to-day existence. I have ADHD and I need to always be doing at least two things at once. I work with my brain, and not against it, and therefore, I find it impossible to just do one thing at any given moment. (Full disclosure, it took me over four decades to stop doing things the neuro-typical way and permit myself to fully embrace the way that my brain works.)

         I used to have the romantic notion that I would be the kind of writer who sits at a perfectly polished desk, looking out of the window onto a beautiful landscape, happily typing away, pulling ideas out of thin air, and producing page after page while sipping on coffee. However, back in the real world most of my writing gets done while I’m doing other things. Writing is thinking, so the only time I ever sit at the computer (laptop, while sitting cross-legged on the couch,) is just to type up what I have been thinking about and completing in my mind all day. For example, this original forum entry was written while doing laundry, vacuuming, and cleaning my daughter’s room. This means that should I ever read this entry again after I have written it, the images that it will conjure are of too many “weird” Barbies, Legos, felt-tip pens, and stuffed animals.

         While completing my undergrad degree I discovered that I was never going to be the kind of student who could sit still, read a textbook, and absorb the information needed to pass an exam. So, I concocted a system that worked for me. I would put my textbooks on read aloud and I would paint. I never knew what I was going to paint. I would just start painting and listen to my textbooks being read to me. When it came to the exams, whenever questions would come up from the textbook, I would remember the image that I was painting while studying, and that image would prompt the correct answer from the textbook. This was my system.

         A friend of mine has synesthesia, she was in her twenties before she realized that not everyone had assigned colours to the letters of the alphabet. And not everyone sees words in colour. She also “sees” music in colour. This brings me back to how imaging can be useful in my work. I have mentioned previously in this course that giving people options as to how they would like to participate is important, and imaging might be something to add to the communication method list. I know a few autistic people who have delayed interoception, and therefore it takes them a while to recognize and verbalize their emotions. Perhaps imaging would be a useful communication tool. People who are non-speaking could perhaps use imaging to communicate their stories. There are many creative options to consider, and this reading was a pleasant reminder that including art and play in one’s research is an option.

Based on the reading, my thoughts about imaging, and how images and words can be intrinsically linked, my verb is Visulinguisting. For example, “I Visulinguisted my way through my undergrad degree.” “I’m just over here Visulinguisting this book.” If nothing else, it is fun to say!

         Unit four has been a wonderful reminder that we can get creative with the methods that we use in our research. That the methods themselves can be empowering to the participants involved. Participation in a study should be of use to the participants in the moment and it should not just be about collecting data. Another useful read in Unit 4 was Sand Drawing by Jennifer Green. Green opens her chapter by stating, “Human interactions consist of a creative bricolage of the resources a culture brings to its communicative tasks.” (71). A firm reminder that not all cultures, and not all people can articulate their feelings verbally.

         My area of study is writing and new media, and this unit has reminded me of why I chose that particular focus area. Ultimately, I want to shed light on a subject that is important to me and that I believe has value in the world. I think my research has the potential to significantly address how society views a specific topic. I would like to create a podcast centred around interviewing autistic people, discussing the language that has been used to describe their neurology, and whether it has had an impact on the way society has viewed them as an individual. I would like to discuss what they have had to overcome, and I would like these conversations to be free-flowing, and to amplify the actual autistic perspective. To do this, I am going to have to watch several YouTube videos on how to create a podcast, perhaps purchase some equipment and of course find participants willing to be interviewed. I do have a participant wish list, several people that I am aware of within this community that I think have a lot to say on this subject. Eventually, I’d like to have these kinds of conversations around all kinds of topics, race, gender sexuality, but for now, I would like to have conversations about the language used to describe neurodivergence. If I could create a podcast and a blog, the end goal would be a book around these conversations that would be transparent, and not solely my interpretation of the interviews.

         I would like to take these podcasts on how language shapes societal views and create a social media site on various platforms, and through those platforms, I would like to create surveys and give people the option as to whether they would like to participate. I could incorporate how they would like to participate, whether they want to leave messages through voicemail or write in long form in private messages, or whether they want to simply answer questions with closed yes or no answers.

 

         It is only now starting to resonate with me how to use interdisciplinary studies to widen the scope of my investigation. Rather than narrowing down the details to study, we can open investigations and dissect the nuances. Eventually, I would like these podcast interviews and any of my research findings to lead to self-esteem workshops that centre around the neuro-divergent community. This unit has reminded me that art and play are acceptable forms of communication and can be tools that allow people to share views and tell their stories in research workshop environments. I am very excited to start the process of my research and to combine my decade-long hyper-fixation on my chosen subject with the ideas from this course and put them into action.

Works Cited

Coleman, R. (2018). Imaging. Routledge Handbook of Interdisciplinary Research Methods. Lucy, C., Fensham, R., Heller-Nicholas, A., Lammes, S., Last, A. & Uprichard, M & E. Taylor & Francis Group. Ch.6. pp. 61-67. https://0-ebookcentral-proquest-com.aupac.lib.athabascau.ca/lib/athabasca-ebooks/reader.action?docID=5447529

Green, Jennifer. (2018). Sand Drawing. Routledge Handbook of Interdisciplinary Research Methods. Lucy, C., Fensham, R., Heller-Nicholas, A., Lammes, S., Last, A. & Uprichard, M & E. Taylor & Francis Group. Ch. 8. Pp. 71-75. https://0-ebookcentral-proquest-com.aupac.lib.athabascau.ca/lib/athabasca-ebooks/reader.action?docID=5447529&ppg=96

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