Disabled like a titanium lollipop: Musician, Model, and Medical Experiment at the 2015 Fringe
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Disabled like a titanium lollipop: Musician, Model, and Medical Experiment at the 2015 Fringe

Posted July 29th, 2015

1683-e37a8444bc2810407a1fd83fba3b1b8a“Anomie was born at age twenty on an operating table. Surgical experiments saved her life but left her disabled like a titanium lollipop.”

Anomie is a musician. Outside of creating music, she models for “Sick and Sexy,” her self-created group for alternative models with disabilities. Anomie has undergone several surgeries.  She is an artist who has Ehlers Danlos Syndrome (EDS), a genetic defect in connective tissue, which impacts joints, skin, and muscles. After a series of medical issues in 2008, she was forced to discard her life as a biochemistry college student in exchange for a new identity. The physical complications that occurred as a result of EDS have not only left her physically disabled, but have also stranded her on the outskirts of society. “My bones are titanium from the neck up, and I’ve been an electric wheelchair user for almost three years now.  I refer to it as ‘my mecha-body,’ although I would prefer a robotic exoskeleton because sitting still for long periods of time really sucks,” Anomie says.

Anomie is taking her music and story to the 2015 Fringe Festival in a show, called Musician, Model & Medical Experiement. During her performance, which takes place at Agno Grill on September 6, 10, and 16, Anomie shares her story and reclaims her identity through song and burlesque. “The songs are about all sorts of things, evil doctors, bad boyfriends, bad girlfriends, vampires, and living in public housing in the projects. I will be doing at least one burlesque act per show. Because of my restricted mobility I cannot dance for burlesque, so I sing and use props instead,” she says. Her songs consist of guitar and digital back tracks. Some of her pieces are collaborative works, while others are solo creations. While Anomie’s music captures her own story, she references the larger disabled community. “I’d like to tell a story more than just singing and performing. The story is my personal experience, but the show is as much about me as it is about all of those who go through these challenges.”

Greatnecklogo-257x300Anomie refers to her community as “the underworld.” She uses this term because disabled people are locked out of society, prevented from participating in mainstream culture, by those in power who fail to include people with chronic medical conditions. Her songs make visible a group of people society tends to ignore. “I refer to ‘crip’ society as ‘the underworld’ a lot because of the way we have to live with chronic medical conditions. I am unable to work a standard job, live an average full life, get married, have a family, and feel like a part of regular society. This is not because of I have Ehlers Danlos Syndrome really. This is mostly because the system we live in does not allow disabled people to do that,” she says. Our city is inaccessible. The larger structure of our society allows disabled people to be disregarded. When the disabled community is not swept underneath the societal rug, they are noticed specifically for their difference through events that highlight their disability, like Special Olympics and non-profit fundraisers. Anomie is either erased from society or put underneath a microscope like a unrecognizable object. “I’ve had done experimental treatments for the neurological problems associated with Ehlers Danlos Syndrome, Arnold Chiari Malformation and Tethered Spinal Cord.  My cranio-cervical fusion surgery was recorded and used for teaching purposes at the Harvey Cushing Institute of Neuroscience.

When asked if she had a fetish, Anomie responded “No, but there are fetishes for people like me.”  She explained one called ‘devotee’ in which a person sexualizes care-taking of a disabled person. The other she explained was called ‘Agalmatophilia’ which is the fetishization of a statue, or in her case a person who is fixed solid with fusion implants.

1683-ab13436c70b238738d5e76d763fbad1c“Disability is the ultimate counterculture.” After struggling to participate in society, Anomie realized that she would always be excluded. Instead of trying to return to college for the third time, she is developing an identity that works for her. As she sings, she claims agency and strength, despite living in a world that denies her power. “I picked the name Anomie for myself, because that’s exactly what the word means: disconnected, rebel. But I’m not disconnected really, there’s a whole community of people living in this ‘underworld’ finding ways to make what we’re given with work.”

Musician, Model & Medical Experiment
Agno Grill
2104 Chestnut Street
Sept 6 at 3pm
Sept 10 at 9pm
Sept 16 at 9pm
Click for tickets

–Courtney Lau

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