A really interesting article just came to the top of my pile of readings: Mitzi Waltz’s Autism = death
In this article, Waltz considers the ways in which autism has been constructed in our society – and explains how this has had such a catastrophic effect on autistics. She begins with a quote: “A diagnosis of autism can be like a living death, for a child may look normal but exist in a state of limbo.” Mitzi continues: “These words were not written by Bruno Bettelheim in the 1950s. The are from a 1999 article by a respected psychologist, Dr Bryna Siegel, which carries the intriguing title ‘Dispelling myths about autism.’
There are so many myths about autism that a single article could hardly do the topic justice. Unfortunately, Siegel’s article perpetuates one particularly resilient myth: that people who carry the label of an autistic spectrum disorder are something other than fully human and fully alive.” (p.13)
Mitzi goes on: “According to Colin Barnes, ‘disability’ refers to a complex system of social constraints imposed on disabled people by a highly discriminatory society’, constraints based on ‘superstition, myths, and beliefs from earlier less enlightened times. [These ideas] are inherent to our culture and persist partly because they are constantly reproduced through the communications media’. Among the ‘superstitions, myths and beliefs’ that have contributed to the formation of modern discourses about autism are the idea of the unclean or possessed body, as expressed in biblical and other texts; the myth of the changeling, which was common to many European cultures; and superstitions attached to monstrosity, particularly as regards the supposedly definitional human characteristic [-p.14] of oral speech, and the anxiety our culture attaches to its absence.
I would add to this list the concept of the ‘normal’ or ‘ideal’ human being, a construction that was first put forward in Greek times with the advent of structured classification systems, and codified ever more tightly since the Englightenment. The normal or ideal is necessary as a standard against which (for example) uncleanness, impairment, and degrees of non-humanness can be measured. It is only through the identification and rejection of the abnormal and less than ideal that these concepts can be constructed at all.
These ideas have been part of human spiritual and cultural beliefs throughout recorded history. Indeed, Barnes is rather optimistic in attributing them to ‘earlier less enlightened times’. The core narratives of medicine and its corollary discipline, psychology, have come to embrace many old myths, including these. The construction of autism as a disability is only one lens through which these myths can be observed in action today.” (pp.13-14)
“…the impairments connected to autism trouble some very basic ideas about what it is to be human. What, after all, divides humans from chimpanzees[-p.15]? Both use tools, live in family groups, and communicate in some way with the members of those groups. The difference in our DNA is tiny; we are prey to many of the same illnesses. Humans, however, speak – or so say linguists such as Noam Chomsky, who claim that the capacity for verbal speech is hard-wired into our brains. Humans who do not or cannot speak challenge this definition, doubly so when there is no easily observed organic cause for the difference, such as injury to the speech apparatus or deafness. When faced with a non-verbal person with autism, the lack of speech has bothered many people so greatly that the person cannot be seen as human.
We also like to believe that humans are social in ways that animals are not. We hold that there is a standard level of ‘relatedness’ present in all normal humans. Because the behaviour of people with autism, and especially young children with autism, challenges this assumption, our society finds it especially difficult to accept.” (pp.14-15)
TRUE AND SO INTERESTING TO THINK ABOUT!
“Our culture currently demands greater degrees of flexibility from people than ever before in human history. Globalisation requires physical, linguistic, and cultural mobility of workers; modern working practices require multi-tasking, lifelong learning, and an affinity for teamwork. Individuals who find it hard to meet these new standards – people like you and me, perhaps, not just people on the autistic spectrum – can find it hard to cope. I would argue, though, that lack of flexibility would not have posed much of a social or personal problem during most of the human past. The definition of it as not just a social and personal problem, but an actual medical problem, is an indicator of a changing definition of what it is to be normatively human.
Monsters, as Tustin’s use of the word to describe children with autism indicates, are beings that trouble the border between human and animal, living and dead. Societies construct their own monsters based on what they fear most, and their concept of normality.” (p.15)
“Fundamentally, to conceive of autism as always denoting impairment and deviance means relegating people with autism to a subordinate position: to disable them, whether the condition itself has caused functional impairment or not.” (p.19)
“…the identification of autism with self-loss, otherness and dehumanisation pervades the dominant, medicalised discourse of autism. These descriptors say little about the nature of autism, and expose people so diagnosed to a higher risk of degrading and potentially dangerous treatment. They also pose a risk to all of us, because these representations of people with autism have been entwined from their very beginning with an effort to define what it is to be normatively human, and act to constrain the boundaries of acceptable human variation.” (p.21)
Ref: (emphases in bold blue mine) Mitzi Waltz (2008) Autism = death: the social and medical impact of a catastrophic medical model of autistic spectrum disorders. Popular Narrative Media 1.1, 13-24