I’ve been thinking about my identity as part of the Visual Dialogues course that I am taking in the Digital Pedagogy Lab. I couldn’t seem to find anything that represented a “selfie” and some participants began posting “fragments” in photo and hand drawn images. I scrolled through photos on my phone, tried to draw, but couldn’t find nor create anything that I felt represented my “self”. I am also thankful for this day without a Zoom meeting, without a keynote to reflect and gather up the fragments of my identity.
What I didn’t realize is what I would be uncovering or discovering and it has me feeling somewhat off balance or out of focus. Maybe even over-exposed, like some photograph that does not reflect the construction of the mind’s eye, and seeking out fragments to collect into some focused imagining of myself.
But, I need to back up and explain. Several weeks ago, I met, not formally, a young person who (I could see from visual cues) is disabled and who was out walking down my street with a support worker. It was a sunny afternoon and I said hello and offered for them to pet my dog, but the worker dissuaded them, moved them away, so I carried on walking home and said goodbye and maybe next time. The next day, the same young person walked by again, but this time with one who appeared to be a parent , a mother, and when I said hello and waved, they enthusiastically waved back and said hello in a way that said “I remember you!”. But, I could also see the parent’s response – the tell-tale signs in the body language, the half-smile, the retreat, the deflection away, the emotional cloak of invisibility to move the disabled child from the voyeur, the sympathetic stranger. I thought, “she doesn’t know.” Today, the young person walked by again with their support worker, but this time, my own disabled child wearing her seizure helmet was with me on the front porch and the visual cues of her significant disability were clear. The worker smiled this time and joined the young person in an enthusiastic wave and now we were all seeing with greater focus and attention to the background, the history, the knowledge. A few weeks of momentary passing visual discourse brought us to a place of understanding; we were now seeing through a similar lense of experience.
I know that parental response in myself. It made me rethink the visual fragments of my own identity, and while I’ve already written about having a disabled child, it always feels self-indulgent – I worry that my audience will think that I’m inviting some pity party which I am not. I often avoid the topic because it’s unique and messy and people often think you are insensitive or hardened. I have also (for me and my other children) tried to write and speak about her disability in a way that validates the many blessings which have come with her life.
But I don’t think I have ever considered enough, or maybe even acknowledged, the intersection of her disability with my own identity until today. I guess the deflection, the cloak of invisibility where one can safely hide the disability at home has been happening all along. I can venture outside of my home into the world of White, able-bodied, cisgendered privilege never truly having to acknowledge this “defective” part of my life. This is now astounding, even to myself, that I could not see this, until I was asked to put a visual lens on my identity.
This is hard and full of exposure. But the hard truth is that my movements through the world are often predicated on her abilities so it makes sense that she forms part of my identity. Much of what I do and my decisions are predicated on sustaining and providing for her. I run and weight train to be strong enough to lift her. I don’t vacation because we cannot get care and her needs are too complex for travel – or maybe that’s what I tell myself because I don’t want the gaze of strangers.
These are not restrictions that I lament, but they are with me and part of me and for me to deny this is to deny part of my identity, like the parent who wants to disappear from the watchful gaze of a world that does not understand.
So here are my fragments of self as they intersect with my identity as the parent of a disabled adult child.
I am turning the watchful gaze back on myself and I’m feeling exposed.