Illness and Disability Don’t Make You Obsolete

The last painting my father did before he got sick is a picture of me. In it, I’m posed with my hands resting atop my head, so that my arms create the shape of an eye with my face standing in as the pupil. The background of the painting is a wash of blue so dense it swirls around me like the deepest parts of an ocean. My head is shaved (a visual clue that dates the piece to my college days when I decided to cut off all my hair) and centered within a ring of honey yellow, flowers cut out around the edges like lace. It is the last work he completed before his heart failure diagnosis changed everything. Now, my father no longer paints, his fingers too stiff from fluid retention. He can no longer swim in the ocean, and if he wants to take a shower, he must thoroughly secure his LVAD—an electrical device that pumps his heart for him—in a waterproof bag to keep it from getting wet. He is a man attached to a machine, a tiny electrical box that controls revolutions of the pump buried in his torso, attached to his heart. When I put my head to his chest to hug him, I can hear its electric whir. 

He often mentions all of the things he can no longer do. His brushes and paints are packed away in boxes. He sold his fishing poles. He no longer owns a bike. He spends the days seated in a recliner chair in his living room, only getting up to move between the kitchen, the bathroom, and back to the chair, and he sees his days as one long continuation of an After that’s forever unwilling to let him return to the Before. Despite all of this—his slowing, his increasing need for help—when I look at him, all I see is my father alive, still in possession of his own, unique, self-contained radiance. Even so, I know he often contemplates his body’s newly altered flexibility, and I worry that he sees himself as an obsolete machine, something to store away in a drawer or prop up in a corner to collect dust. Sometimes I catch him shaking his head in disbelief when trying to accomplish seemingly simple things like opening a can of soda or pinching a tissue from the Kleenex box. He tells me he doesn’t want to be a burden and warns me, almost apologetically, about all the things he cannot do anymore.      

When I recently read Kazuo Ishiguro’s new book Klara and the Sun, I was struck by how much the narrator Klara, an extremely advanced robot known as an AF or Artificial Friend, reminded me of my father. In order to function properly, Klara must get her energy from the sun. If deprived from sunlight for too long, she begins to slow down and “get short.” Much like my father, she is reliant on an unconventional outside energy source to fuel her. For my father, his energy comes from electrically charged batteries that must be switched out every few hours on a controller that hangs in a bag permanently slung around his neck. If the controller stops, the pump stops, which stops his heart, which stops everything. Like Klara, he is a sort of hybrid human—a part of him operates by machinery, and he occasionally refers to himself as “the Bionic Man”—and as with Klara, this machinery often creates limitations. 

Klara is a B2 model robot, meaning her programming and abilities only extend as far as her specific model allows. She does not possess the agility or basic sense of smell that the newer B3 model AFs have been designed with, and she is constantly aware of these shortcomings in relation to her role as AF to Josie, a young girl with a mysterious, undefined sickness. As an AF, it is Klara’s job to be a companion to Josie, helping her through the ups and downs of childhood, much like my father did with me in his role as “parent.” If my father were an AF, he would be a B2, or maybe even a B1, not quite as dexterous as the newest models and lacking a defined sense of smell. Still, like Klara, his humanity is both separate from and not dependent on the mechanical device that keeps him alive. 

Within the world of Klara and the Sun, illness and disability are seen as weaknesses, and much like ours, Klara’s world values productivity and efficiency over everything else. Parents subject their children to a dangerous, undisclosed gene editing process in the hopes of giving them a better chance at achieving success, and those who haven’t been “lifted” in this way are viewed as deformed and uncivilized. Josie’s best friend and neighbor, Rick, is one of the “unlifted,” and when in the presence of lifted children, he is ridiculed and treated with apprehension. Rick’s mother is living with an undefined mental health condition that keeps her locked in the house, occasionally experiencing bouts of mania. Other parents regard her with uneasiness and ostracize her from their groups. Josie herself is ironically unwell from the gene editing designed to enhance her biology, and she often tries to mask her sickness from everyone, always aware of the fact that it limits her in the eyes of those around her. We understand all of this through Klara’s imperfect and sometimes confused perception—but she is crystal-clear on her own limitations as an outdated model. Both Klara and her owners frequently reference her status as inferior to the B3 AFs, and she occasionally wonders “how much [Josie] really did wish she’d chosen a B3” over her. Unlike her owners, though, Klara typically understands her B2 capabilities to be fact rather than misfortune. Being a B2 doesn’t make her inferior—it just makes her not a B3. The mechanical body her artificial intelligence inhabits is a structure unique to her, one that gives shape to her entire consciousness. To Klara, bodies, whether physical or mechanical, are just as unique as the minds that inhabit them. They are to be appreciated as-is, and to swap one’s identity from one body into another would be to risk dilution of the very thing that makes each person uniquely human. 

Klara exhibits significant growth over the course of the book, but her body, by design, is intended to be static. She will not age like a real human, and she will only ever be as efficient as the B2 capabilities allow. The more the AF models are updated to include better technology, the further away Klara will get from her marketed usefulness. Eventually, she will experience a “slow fade,” a term used to denote the decline of a robot’s technological ability. She will no longer be able to keep up with the needs and wants of the fast-paced lives of human beings. When this happens, she will be discarded, much like everything society comes to label, however falsely, as obsolete. I think about my father sitting in his easy chair. Like Klara, his machinery—heart and LVAD—is deteriorating, but his essence, the things that make him quintessentially my father, are still here. The heart failure is a diagnosis, yes, but it is not his entire personality. Often, our society measures human worth by a person’s output, and we praise those whom we see as defying the odds. I struggle with this notion of “overcoming” and the way it allows for illness and disability to be viewed like hurdles that should be cleared gracefully so a person can get back to the business of living. The life my father lives now looks very different from the one he led prior to his heart failure, but it is still his life. 

There is a part in the novel where Josie is explaining to Rick the importance of “having society.” She describes it as “when you walk into a store or get into a taxi and people take you seriously,” and she deems it necessary to “have society” if you want to succeed. By this definition, society is something to be possessed, a personality or appearance that immediately grants you respect and visibility. Josie tells Rick that his mother does not have society and that if he’s not careful, he will be just like her. It is implied that society is something to be gained and lost, and that Rick’s mother has lost it by living with a mental health condition. Society, then, leaves little room for inclusion of those living with illness and disability. To be taken seriously, one must be considered “functional,” and like Klara and her eventual outdated technology, illness and disability have the potential to render a person obsolete in the eyes of civilization.

When my father’s heart failed, he lost many of the things that defined him. He lost his job, his driver’s license, his ability to climb up and down an average flight of stairs without difficulty. By society’s standards, he is no longer contributing, and yet he is still here. I’m not sure if my father, by Josie’s definition, “has society” any longer. I’m made acutely aware of this fact during doctor’s appointments where nurses ask me questions instead of him. So often, I fear the world views my father as an object to quickly skirt around. There is a refusal to stop and address, to look him in the eye. I balk at the disrespectful distress I often observe people experiencing when interacting with my father. Just talk to him, I think. Ask him his name instead of me. Ultimately then, “having society” is solely dependent on the opinions of others, a shallow concept that is significantly less meaningful than having humanity. Humanity is more than just being a productive cog in the machine, and even though Klara’s journey might end in obsolescence, it is her humanity that elevates her and sets her apart from everyone else. 

The LVAD has changed many things for my father—or more accurately, the end stage heart failure determines everything about his days. He is fragile now, his world revolving around his access to electricity. He spends his days watching the news and taking frequent naps. I suppose you could say he, like Klara, has begun his slow fade. When I call to ask him how he’s doing, he says things like, Not so steady on my pins today, or I’m just here, sitting in the museum. In his mind he has become put on display, relegated to a glass cabinet pushed against a wall as the rest of the world moves past, stopping on occasion to peer in. Like Klara sitting in the window of the AF store, he watches as the sun’s nourishing rays wash over the houses on his street. 

Recently, we’ve begun talking about color, and when I ask him to tell me about yellow, he comes to life. Yellow to me is like the color of the desert, the warmth of it, he says. But it’s also the color of the sun when you close your eyes in the summer. You’re outside and you close your eyes and you see yellow. I bask with him in this memory, this notion of sunlight filtering through closed eyelids. Like Klara, we believe, however briefly, that the sun’s rays will be kind to us, and for a moment it’s as if we’ve transcended our bodies so that all we are feeling, all we are thinking about is that blazing light, lemon-y and soft as it nourishes our skin. What a moment to exist in. What a gift. What a way to be alive.