Word and picture are not simply conceived as neutrally different available choices for communication … they are used to define what and who we might be and do in our lives with others.
— Anne Frances Wysocki, Drawn Together
Storytelling, for me, had always been about articulating an emotional landscape. Dance was the first outlet, a deeply personal expression that allowed me to tap into my innermost thoughts, dreams, and fears, almost at a subconscious level. Writing, too, became a conduit for me. I was both maker and primary audience. Who else was I communicating with? In my younger years, I probably sought the approval of my parents. After that, teachers. Never peers; I didn’t think I had any – not because I was so superior, but because I felt so out of place that I couldn’t truly connect.
I told stories so that I, like Stuart Hall asserted, could occupy my identity retrospectively. I learned who I was (and wasn’t) through those creations: Nature-lover, introspective, solo act, turbulent, passionate, inquisitive, perfectionist. I also determined what it was I wanted to re-work. Creation became catalyst for change, re-invention.
Eventually, my passion became my career, and that spark became more of a tool, accessed and used on command as content marketing became the concept du jour.
Multiple sclerosis, as terrifying and terrible as it is, has given me a chance to communicate again with a deeper purpose, to tap into parts of me that I feel comfortable sharing with others, because now I do have a community of peers who identify with my experience. My impairment has given me license to use my voice, while the disability rights movement has provided the foundation for challenging the current narrative of disability as deficiency.
Georgina Kleege’s essay “Blindness and Visual Culture” An Eye Witness Account” was a revelation. By examining her analysis on the “Hypothetical Blind Man,” I was able to find parallels with the medical model of disability, which assumes that the actual impairment is the biggest issue for those who might have a lifelong disease, chronic illness, or who are blind or Deaf. The reality, of course, is that oppression is external, stemming from a world that has a very different cultural representation of disability than what we have. As Kleege writes, blind authors have in common “an urgent desire to represent their experiences of blindness as something besides the absence of sight.”
And that’s what this digital narrative has meant to me: An opportunity to represent this experience through a lens that is outside of what is considered normal. Queerness, as Jonathan Alexander and Jacqueline Rhodes write about in their essay “Queerness, Multimodality, and the Possibilities of Re/Orientation,” can be used to “remix reality” and embody a new space in “dynamic and productive dimensions.”
This essay, more than any other from this class, gave me the agency to chase my gut. As Rhodes connects her lesbian first person to the techne of self, she hits on exactly what I had felt since my diagnosis and blog writing, “the importance of lived experience to the formation of an ethical stance.”
The concept of heteronormity, that there is one prescribed path for sexuality, is achingly similar to the idea of the able-bodied normative, in which there is an ideal type of human that is unblemished, free of deficiency. What exists, though, is a spectrum, not a binary. And one is not superior or inferior to another.
For my narrative, I actively chose not to veer too far in the direction of freeplay or disorientation. To me, that would have been a disservice to my primary audience, whom I identified as those newly diagnosed with multiple sclerosis. They need information more than abstraction. Perhaps, as the narrative and discourse community grows, there will a way explore these uncomfortable spaces that need to be shown. I attempted to start that with the “What’s your word for MS?” but I felt my creative impulse and my desire to connect were at odds.
There were also the physical limitations. How many multimodal options are available when I can’t feel the keys on my laptop anymore? Audio and video editing software requires more fine-tuning than I can muster at times. Can I find the exact word or phrase that’s on the tip of my tongue when brain fog takes over? What other avenues should I have pursued to create my digital narrative? What adaptive devices do I need to make this work? Given the scope, would I have the time and energy to find them?
The personal is political in very tangible ways for me. I think that’s been my driving force throughout all of my projects, whether it’s examining the image of self and identity, determining what multimodal means to my work, how to navigate a disabled identity, or how collaboration can turn into an act of dominance or submission.
I want my digital narrative to continue to expand with the voices of others in the MS community. This collective identity is one that empowers those of us with like experiences. There is a stigma that comes with any disease or disability, though, and I have to be sensitive to others who might not be out of the MS closet, so to speak. For that reason, I chose not to include community representation in my original narrative, although it is certainly in the road map. The discourse community, though, is active, with questions coming in from the “Ask me a question” feature.
Looking back at Kurt Vonnegut’s Shapes of Stories, it’s not easy to determine which shape mine is taking, but likely the Which Way is Up. The only way I can really know, and know myself, is to keep writing it.