Beneath my clothes there is 1.8 square metres of skin stretched over five litres of blood, thirteen billion nerve cells and twenty-five billion red blood corpuscles.
I’ve got twenty-three chromosomes in each cell.
The chromosomes in each pair are the same length, apart from the fourth. There, one of the chromosomes is fractionally shorter than the other.
That’s why I can’t get up and walk out of this text.
One might hope that, at this point in time, especially more than two years into a global pandemic, that illness and disability might be understood as something that could strike anyone, at any time, even you or someone you love. But, as we have seen, human beings have a stubborn capacity to blame those who fall ill, experience extended symptoms or die for their outcomes, citing age, lifestyle, or co-morbidities. The stigma and shame well known by those of us who live, love someone and/or work with people who have a disability, has been replayed and reinforced during this extended period of co-existence with a persistent, evolving virus with unknown long term consequences.
The events chronicled in Norwegian writer Thorvald Steen’s The White Bathing Hut illustrate the extent to which societal attitudes toward disability can lead to deception and family dissolution. The unnamed narrator is a man nearing sixty whose deteriorating physical condition has left him dependent on a wheelchair. One day, with the Christmas season approaching, he receives a call from a woman who identifies herself as his cousin, the daughter of his mother’s brother. The existence of an uncle and a cousin come as a complete surprise to him, but, as this woman, Eline, explains, his family had refused to have anything to do with hers and she had only come to know of him by chance. She also reveals that her father and their mutual grandfather both died of the same disease he has. This unexpected information leaves him wondering if his entire life was constructed on a web of lies and sets off a chain of urgent inquiries. His account unfolds through a spare, tight narrative reported from an unusual perspective, so to speak.
Several weeks after Eline’s call, while seated at the table trying to find a location on a map of Norway, our narrator leans forward, realizing too late that he’s forgotten to apply the brakes of his wheelchair, and he and the chair topple over as if in slow motion, each movement described and dissected in poetic and anatomical detail. “I land in a heap. / Soft and hard. / Textiles, hair, flesh and bones. / That’s all there is.” His wife has just left for a week-long business trip, his daughter is away for the weekend and his caregiver is off for the holidays. His phone and alarm are on top of a shelf out of reach and he is now consigned to a new vantage point… the floor.
Unable to get up, his thoughts turn to his own past, to the development of his disease, and the more recent investigations and interrogations triggered by his cousin’s phone call. He had been diagnosed in his teens with a progressive form of muscular dystrophy that causes gradual muscle degeneration and eventual paralysis—news that was a terrible blow to him as an athletic young man with a promising future as a ski jumper. But the reaction of his parents was even worse. They warned him to tell no one. They refused to speak about it. Tried to wish it away. So he was burdened with a secret that slowly unveiled itself as his muscles weakened. Now, armed with new information there is a further significance to his desire to better understand his place within the broader context of his family history: his daughter Karoline appears to have inherited the same crippling condition.
The spare, tight narrative proceeds in short, nonchronological chapters that move between the protagonist’s childhood, youth and adult years, and the few weeks that have just passed. He has recently made two visits to his recalcitrant mother who informs him she is dying of cancer but refuses to answer his questions. What little he can glean guides his search through archival sources for biographical details about his uncle and grandfather. As he looks back over his personal life experiences, his efforts to conceal his pain and growing weakness—often by putting himself at risk—is contrasted against the demonstrations of physical strength that marked his earliest years. The increased awareness of body difference and stigma lead him to believe he will be forever unloveable. As a young man, his future, as he sees it, looks bleak:
How could I make a plan of any kind? I didn’t know what I’d look like or be able to do in a few years’ time. I hated my body. If anyone had told me that I ought to think positive, I’d have hit them. The weekends were the worst. Sometimes I lay in bed the whole of Saturday and Sunday without the energy to sit, eat or drink. In the mirror I could see that a few of the little muscles around my eyes and mouth had completely disappeared.
This is a very physical text. A story that is bound to the body. Driving this physical aspect home are the poetic interludes, often containing minute skeletal and cellular descriptions, that regularly relocate the narrative in the immediate space, on the floor, where the narrator observes his surroundings and struggles to shift his reluctant limbs into a position that might enable him to push himself up. It is an exhausting, futile effort. With a steady resolve he returns to his account.
Although the disability central to this novel is explicitly visible, The White Bathing Hut manages, without ever exercising a heavy hand, to call attention to the extent to which any disability—physical, cognitive or mental—is met with a social stigma that extends beyond the afflicted individual to the family and their contacts. It also alludes to an even darker subtext, that of Norway’s difficult historical relationship with eugenics. Of course, neither of these factors are unique to Norway, nor are they entirely behind us. Shame associated with disability still exists, and the ability to selectively control for desired sex, against congenital conditions, or even for other qualities raises serious ethical questions. Through this book’s very honest, resilient and endearing narrator, many of these critical issues are brought to light.
The White Bathing Hut by Thorvald Steen is translated by James Anderson and published by Seagull Books.