Imagine a world where disabled people are recognized and celebrated because of their full and whole experience in a unique body. The complex knowledge of and attention to different systems and networks in the body is an invaluable and beautiful perspective that disabled people have. The site-specific installation, “Fasci/a\nate,” embodies and honors my experience with Ehlers Danlos Syndrome- a genetic, connective tissue disorder that contaminates the ‘glue’ (collagen- like what makes up fascia) trying to hold my body together. This has taught me so much about treating my body with kindness, appreciation and respect in a holistic, sacred way that is unique to my experience with Ehlers Danlos Syndrome (EDS). The body, lifted up with beams of light, reflects the weblike shimmering of the fascia network that exists just beneath the skin surrounding and holding every organ, muscle, blood vessels, and more while also sensing, reacting, and transmitting through electrical impulses. Each motion sets off a chain reaction, highlighting and magnifying the interconnectedness of the body to metaphorize and call attention to how crucial creating an accessible, intersectional future is. Instead of the ‘perfect’ (read: able-bodied) specimen being elevated and revered, we choose a body that has an exceptional relationship with the inner workings and complexities of the human body, spirit, and soul to highlight.
This installation is site specific, created for the Speculative Futures Exhibition and Graduate Symposium and is made out of electroluminescent wire, plastic monofilament of varying dimensions, zip ties, glue, and iridescent & reflective materials. Alexis Neumann (MFA Visual Studies, MA Critical Studies) is an installation artist using light art and Bio/SciArt to draw attention to the complexities of the human experience engaging Disability Studies, Intersectionality, Theology, Cultural Studies and other emancipatory fields. Check out alexisneumann.com and follow @alexisneumann.art for upcoming exhibitions and research. And follow @disabled.artists to see more artists using their experience with disability to create art.