We usually talk about autism and many other aspects of our everyday experience as a disorder, with all the connotations that medical interpretations bring – of disease, individual tragedy and suffering. Autism is a mental disorder within the Diagnostic and Statistical Manual of Mental Disorders (DSM), a dyad or triad of impairments, a learning or language delay and a set of deficits. All of these words medicalize the everyday experience of people with autism. Some elements of life — particularly the minutes spent in consultation with a doctor — are medical, but as soon as you leave the consultation room, you return to being a child, a boy, a girl, a person, or whatever else is your primary identity. Taking on the belief that you are diseased and in need of cure (especially when there is no cure, nor any immediate prospect of cure for autism) can be very damaging to self-esteem.

Continue reading Disablement, like homophobia, is social oppression →

Public spaces challenge everyone to sensory experiences that they have little control over, other than leaving or changing the time and places you visit. Sensory experiences include the obvious external 5 senses, sight, sound, smell, taste and touch. They also include the internal senses, vestibular (balance, challenged on escalators and lifts), proprioceptive (body location, challenged in unfamilar small spaces) and temperature (challenged when you have no control over temperature, but only one set of clothes).

Continue reading Sensory issues in public spaces →

“I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.” – Judy Rapoport, a senior child psychiatrist at the National Institutes of Health, in Slate magazine.

I often think about the language of disability, from three sometimes conflicting perspectives – fictional depictions that are positive, political advocacy about disability and individual access to services. Fiction works best for me when the characters are real, and when their impairment or disability is only described (if at all) in relation to events in the plot. Political advocacy is mostly about raising awareness and gaining group recognition, with a strong focus on group identity. Access to individual services is often dependent on ticking the label that matches a box on a bureaucrat’s form or a piece of antiquated legislation (even if it says ‘Zebra’).

Continue reading What to call a (disabled) body →