Modeling disability: softly making the invisible visible, by Libby Evan (2020) Bachelor of Fine Arts Senior Papers 74
“I am not asking for pity. I am telling you about my disability.” – Eli Clare1
In the following Bachelor of Fine Arts thesis statement, you will not find someone overcoming their disability. You will not find a tale of inspiration. You will not find a cure for ableism. You 2 simply will find an individual’s experience of disability— my experience of disability.
My invisible disability puts the medical model and social model of disability in constant tension as I navigate everyday life living with Chronic Fatigue Syndrome and severe arthritis. Both models seek to find blame for disability, whether in searching for a medical cure for illness or putting blame on society at large for creating barriers. Instead of abiding by these limiting models, I cope with disability in my own way. I embrace the contradictory notion of having significant physical limitations while giving into the pressures of our capitalist society to physically produce.
I make my own models through accepting my identity and embracing the human-like, huggability of soft sculpture. As a sculptor, I do not need to find blame through theoretical models of disability. Instead, I make literal models representing my lived experience. I turn my invisible, private experiences into visible, public ones.