Sandra Allen didn’t really know their “crazy” Uncle Bob during their youth growing up in Northern California, but in 2009 Bob sent them his autobiography, in hopes that they would share his story with the world.
The autobiography — 60 typed, single-spaced pages of rambling, error-ridden text in all caps — was their uncle’s account of a life lived under a “psychotic paranoid schizophrenic” diagnosis.
In their new book, “A Kind of Mirraculas Paradise,” their first, Sandra Allen —who uses the pronoun "they" — has translated their uncle’s story into readable form. Included is their own investigations into the world of psychiatric diagnosis and treatment, and whether we as a society are taking the correct approach to it.
Allen, who holds an MFA from the University of Iowa’s Nonfiction Writing Program, has written feature stories for CNN Opinion, BuzzFeed, Pop-Up Magazine, and others, with work forthcoming from Pacific Standard. Since receiving Bob's manuscript and translating his story, they have focused their work on mental illness/madness, and schizophrenia, and how we view and treat those who are diagnosed as such. By phone from New York City, Allen discussed these issues and others with the Missoulian.
Q: Your background isn't in mental health issues. Your interest here is a result of your uncle's story essentially falling into your lap.
A: Yeah, I went to school to be a writer. I had no interest in schizophrenia, or mental health, before I received Bob's manuscript and began reading it, and then writing it, or a version of it. It was a few years before I developed an interest in these topics, more generally, and began reporting on them. I think what I wanted to do is get a sense of where Bob's story and where my project about him entered in to conversations now. So I really tried to get myself out of the house and spend time with people who had been diagnosed with schizophrenia who have been through the mental health care system now who have perspective to lend on some of the biggest questions that Bob's story raises.
Q: Both at the professional, medical level, and the more common cultural level, mental health issues, like schizophrenia, are a constantly moving target as far as defining diagnosis, treatment, or even what "it" really is, right?
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A: I hope the book succeeds at taking this question on: What is schizophrenia, what is mental illness? What is known about a category like schizophrenia and what is not known? And I think the question that follows is this: Is this [definition] a valid construct, and is this a helpful construct? Bob's story provides one set of insights as to whether the labels he received, the treatment he received — from the psychiatric system, from society as a whole — do they help him with whatever it is that might be different about him versus everybody else? That there are people, like schizophrenics, the "mentally ill" — I put that in quotes — is a very real concept socially, and legally.
Q: Schizophrenia in particular is seen as one of those “scary” types of illnesses by many, if not most, people.
A: Yes, it is. You've got the general public, to which I think you allude, who have a vague and kind of prejudiced sense of what, for example, a schizophrenic is. And our media, and popular news reports, all lean very heavily on all kinds of stereotypes, like people who are schizophrenic are monsters, or they can't control themselves, or that they're violent. These are all myths.
Then you have people, including the professional organization of psychiatrists in this country — who publish the guidebooks which contain the descriptions of all of the psychiatric disorders and how to prescribe them — who believe very strongly in what might be called the “bio-psychiatric” interpretation, and you've got people like my uncle, who totally disagree with that statement. So I did want to look at that big question, but I also want people to understand that there is a real label that comes with these illnesses, and what it would be like to be a person who has to live their life being told that they are schizophrenic.
If someone is diagnosed schizophrenic, that has huge implications for the rest of their life legally and in our society. Yet these categories are biologically unconfirmed, and one of the big situations I hope to unfold for my reader in the course of "A Kind of Mirraculas Paradise" is the nature of this debate.
Q: Mental illness in general, and schizophrenia in particular, bear a certain stigma in our society, don't they?
A: I would say sure, as a first answer, but I would also like to add that not everyone accepts this illness/wellness metaphor. My uncle is someone, for example, who I don't think viewed himself as ill. Where do we fit his point of view, his voice, into everything else? If we allowed our discourse about mental health to actually include the points of view of people who have been diagnosed, I don’t think we would lean on this health/wellness metaphor quite so much. There are people who view themselves as spiritually gifted. There are people who view themselves as being mad, are proudly mad. So I seek to complicate it a bit, because the truth of it is there is no medical reason why someone like my uncle should be called ill. He had not been tested biologically to have had an actual disease. While some may feel that eventually there will be a disease that’s discovered, if you instead allow people like Bob to define themselves, and to add their reality to the rest of the conversation, what happens? I think that is one of the spirits of this project. It’s not to say that I know for certain which side is right in every debate, but it’s to try to add the point of view of someone like my uncle who is traditionally left out of these discussions.