The Double Bind of Disability

Exposing the ableism underlying medical innovation
As medical advancements continue to shape the detection, diagnosis, and treatment of disability and illness, technology is often presented as a pathway to autonomy. Challenging this assumption, Rebecca Monteleone shows how medical technologies contribute to a cruel double bind, forcing disabled people to be accountable for adapting to a world built by and for nondisabled people while dismissing their lived experiences in favor of medical expertise. Far more complex than simple progress, these technologies are more oppressive than liberating when they place the burden of care on individuals and perpetuate societal ableism that demands that bodies look, move, and function in certain ways.
 
The Double Bind of Disability examines the complex relationship between medical technologies and their users, highlighting tensions between personal responsibility and medical authority. Sharing the perspectives and experiences of users of three medical technologies (prenatal genetic screening, deep brain stimulation, and do-it-yourself artificial pancreas systems), Monteleone analyzes how users navigate the constraints of these systems and also imagine a new, more liberatory approach to healthcare.
 
Asserting a bold vision, Monteleone describes a future where medical interventions take seriously the lived expertise of disabled people to address ableist infrastructures rather than require the modification of nonnormative bodyminds. She calls for a radical reimagining of medical technology that moves beyond individualistic frameworks to embrace collective experience and embodied knowing.
 
 
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Rebecca Monteleone is assistant professor of disability and technology at the University of Toledo. She is coeditor of Disability and Social Justice in Kenya, and her writing has been published in the journals Hypatia, Disability Studies Quarterly, and the Canadian Journal of Disability Studies.