“ ‘Are You Sure, Sweetheart, That You Want to Be Well?’ ”: An Exploration Of The Neurodiversity MovementKathyrn Boundy [*]
During a discussion of the embodiment of cultural knowledge and the ways in which
(forced) assimilation can be experienced as a violation enacted in the deepest level of self, Jacqui Alexander quotes the opening scene of Toni Cade Bambara’s The Salt Eaters, in which one character asks another, ‘Are you sure, sweetheart, that you want to be well?’ (as cited in Alexander, 2005, p.277). This question gets at the heart of many of the issues with which the Neurodiversity movement and the people who identify themselves as part of the communities from which this movement stems are concerned. What does it mean to be ‘well’? Who is it that gets to decide if one is well or not? By what criterion is this decision made? Is it the subjective experience of the patient which determines wellness? The opinion of the medical community? The extent to which a person is able to blend effectively into the social and economic world, regardless of the possible cost to the person doing the blending? In a world in which emotional, perceptual, intellectual and interpersonal experience can come in many forms and configurations, who is it that must accommodate whom and to what extent? To what extent do the so-called ‘neurotypical’ have the right to enforce their social and behavioral rules and expectations on those whose ways of experiencing themselves and the world differs from the accepted norm?
While the actual term ‘neurodiversity’ was not seen in print until 1997, The neurodiversity movement is often thought to have begun with a speech made by Jim Sinclair at the 1993 International Conference on Autism at Toronto, called ‘Don’t Mourn for Us.’ In this speech, Sinclair asked the parents of autistic children to try to understand that ‘Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion and encounter. It is not possible to separate the person from the autism’ (Sinclair, 1993). He further asks them to understand that what it is they feel they have lost, when they speak of ‘losing a child’ to autism, is not the actual child him/herself but the idea they had of what that child would be like, what kind of relationship and experiences they would have with the child. The parents of an autistic child, he says, have not lost a child, but an illusion. They must mourn the passing of the illusion and then accept the child on his/her own terms (Sinclair, 1993).
Jim Sinclair is himself autistic and his speech stood as a representative of the very beginnings of a self-advocacy movement for social acceptance and self determination that was developing within the autistic community in the mid-nineties. While there had always been autistic advocacy groups, it was not until recently that these groups were led by members of the autistic community themselves. Increasing use and availability of internet technology has played a key role in allowing autistic people, [1] who would otherwise be unable to meet, speak, and form a cohesive movement to gather and make their views, wishes and ways of perceiving themselves and their differences known.
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Currently, the concept of neurodiversity has been expanded beyond the autistic community to include people who have been diagnosed with attention deficit hyperactivity disorder, bipolar disorder, dyslexia, Tourette’s syndrome and numerous other mental, intellectual and emotional differences. Activists from within the neurodiversity movement take the stance that all these differences should be seen as part of the spectrum of diverse human experiences and valued as such. They believe that neurodiverse individuals should not be forced to conform to the behavioral standards of ‘neurotypicals’ and that they should not be coerced through blatant or subtle means into taking unwanted prescription medications to treat their conditions. They believe that much of the pain and difficulty autistics and other neurodiverse people endure is due to the pressure to conform to intolerant and restrictive social norms, institutions and habits -- not due to the existence of neurological differences in and of themselves (Baggs, n.d.).
Kathleen Seidel, a neurodiversity activist who has a son with Asperger’s Syndrome and exhibits many of the characteristics of Asperger’s Syndrome herself, addresses the counterproductive nature of trying to force people on the autistic spectrum to conform to behavioral norms in the following excerpt from a letter to the Congressional Autism Caucus. She writes:
Many autistic adults have described how they find eye contact uncomfortable, distressing and counterproductive to comprehension or communication; many have described how rocking or other harmless repetitive acts help to calm their nerves and focus on matters at hand. I believe that we should pay attention to such information so that we do not spend a lot of time and effort trying to persuade both autistic children and adults to imitate behavior that is alien and nonfunctional to them, or to eradicate behavior that is natural and useful to them, for the sole purpose of making it easier for inflexible neurologically typical people to feel comfortable in their presence (Seidel as quoted in Antonetta, 2005, p.10).
The desire to be freed from forced behavioral conformity, when such conformity is not seen by an individual to be in their best interest, is probably the most central concern of the neurodiversity movement and community. Much of the therapeutic focus in programs working with children with Autism and Autistic spectrum disorders aims at teaching these children how to control behaviors seen as socially aberrant, such as ‘stimming’ (the term used by people within this community to describe self stimulating behaviors such as rocking and flapping which are used as a means of self soothing), and how to mimic ‘appropriate’ neurotypical behaviors such as maintaining eye contact and learning to engage in social small talk and group activities.
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In her manifesto “The World I Want to Live In”, activist Amanda Baggs describes this type of behaviorally repressive environment as:
A world in which autistics are expected to submit to being ‘repaired’ . . . a world where autistics are subjected to abuse, ridicule, and punishment for being who we are . . . a world where autistics are given dangerous psychiatric drugs, and treatments which attempt to force neurotypical behavior on autistics. This is a world where autistics who manage to mimic neurotypical behavior well enough to “get by in the world” are often plagued by deep emotional and self-image problems because of the discrepancy between who they are and what they appear to be . . . This is a world where autistics are punished every day for being real, and rewarded for being false (n.d.).
Activists within the Neurodiversity Movement have no interest in learning to be or appear to be the same as ‘neurotypical’ people. They do not want to learn to ‘pass’ and they do not want to be punished, by lack of access to satisfying work, educational, and recreational opportunities and social sanctions, for not passing. They want to be recognized for their differences in such as way that those differences are seen as positive and valued for the alternative perspectives they bring to bear on consensually accepted modes of perception and interaction. They want, as Baggs goes on to say, ‘to live in a world where it is okay, even admirable, to be autistic . . . a world where I can be sure that autistics will be loved and respected as who we are, not drugged or forced to behave as something we are not’ (n.d.).
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