Apr 27, 2018
openings and closures
One of the themes of my book is about how all states of the body and its gear make for what I’m calling openings and closures in a life—openings and closures that are co-created with hardware and software. Look and listen closely to what people with disabilities are saying about their own lives: It will never suffice to describe someone as “bound” to a wheelchair or “suffering from” autism, and it will never be really truthful to say that a technology “gave someone her life back.” Any real story, closely attended, will show itself to be far, far more interesting. Every body is a patchwork, which means that all states of being come with possibilities and impossibilities, gradations of change, capacities that diminish while others open up, all in a close orchestration that plays out with and without design or technology. Some conditions, as in the case of true disease, we may well wish away. But others make us who we are, and the line is blurrier than the common narratives would have us believe. It’s a state of dynamism for everyone, full stop. Once you see that to be true among people with disabilities, you may feel invited yourself to recognize that same dimensionality, to recognize you share it.
Sharing openings and closures doesn’t mean “we’re all disabled” in a glib way. It means that there’s more that is true about being disabled than the available narratives make known. More that is true and more to be known that is not only experience, but also cultural knowledge. It’s what the scholar Susan Wendell means when she says in this passage from The Rejected Body: Feminist Philosophical Reflections on Disability:
Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, “normal,” and sane…If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.