Saturday, September 28, 2013

Fear of Being "Othered:" Diagnoses and Loss of Privilege

We live in a time when more and more kids and adults are being "diagnosed," with behavioral, neuropsychological or mental health "issues." While it is hard enough to live in this world with whatever issues we are facing that lead to a diagnosis, the diagnosis itself creates a whole new hellish world of its own: one of being "othered," and therefore losing respect and privilege that comes with being "normal" or one of the masses. Many people who experience behavioral, neuropsychological or mental health issues rightly fear the diagnoses and labels that are given to their challenges and experiences, and the stigma that comes with them. The very fact that we enter the world of "disability" or the equally stigmatized euphemism "special needs," takes us down countless rungs on the ladder of privilege. Career doors that our talents could open for us are slammed shut, sight unseen. Strangers judge us without taking the time to get to know us. Other people run the other way as we become the dark mirror of what everyone fears might happen to them or someone in their family. After all, being on "the spectrum, " having behavior or mental health issues, seems to diminish our personhood in the eyes of our human eat human society. If racism and sexism were issues of much of the 20th century, all the other ways we reduce or "other" those who struggle with neuropsychological, behavioral or mental health issues are issues of our current times. Truthfully, ALL of us are unique beings and have "special" needs. It's just that some special gets held in high esteem and other special gets labelled as "crazy," "sick" or even just "different." Writer Rachel Cohen-Rottenberg notes, "Both autism and mental health discourses in this country are extremely pathologizing and destructive. It is hard to believe the change in ways in which the world looks at someone pre- and post-diagnosis. The loss of 'normalcy' privilege, of respect, of a certain kind of cultural authority are really mind-boggling. You might be the same person you always were, but once you lose the label of 'normalcy,' a great many other things change." As a person with an issue approaches the terrifying process of evaluation and diagnosis, the fear and resistance to both are totally founded in the reality of the impact of such evaluation. The person needs support against the way society stigmatizes them (and all of us). A diagnosis can be a source of information and self-awareness, but that is a much harder frame to find and internalize when the outside world rarely gives that message. Cohen-Rottenberg also warns us to be wary of the experts we are told to put our faith in. They may do well-intentioned work, but rarely know what they are working on from the inside out. As I have been searching for resources for working with Aspergers, there seem to be a lot more resources to help younger kids succeed in school or for people to get medication, than to deal with the human, social, emotional and spiritual issues of being wired differently. Our medical system separates neuropsychological issues from mental health issues, when often they are inter-related and inseparable. This makes getting any kind of integrated care virtually impossible. The short-term nature of hospitalization and care, with an emphasis on moving the body because it is expensive to "warehouse" or "babysit" a person in a crisis, leads to never truly understanding the human being in the crisis, and never providing a context for long-term care that can truly help a person. Forced medication with needles and straight jackets is traumatizing. Yet, this is the norm for how to treat people in psychiatric crisis. If someone is scared to death of the treatment, they are beaten into submission or put out on the street. If the medication helps stabilize the crisis, then there is some redeeming value in this treatment. However, we somehow miss the heart of the matter and too often populate our system with robots, not compassionate care. I do not yet have answers of how to build a large and deep enough village to make a dent in the brokenness of our health care system or to try to educate the masses and transform stigma into understanding. I am just more and more clear as I journey through hell, that SOMETHING needs to be done.

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