I want to make room for a hard conversation. The relationship between disability and disease is often blurred, in part due to depictions that disabilities need to be cured. Both disability and disease can define people based on their limitations. In doing so, we often have a default ideal of ability and health that somehow constitutes humanness. The answer seems simple: return these people to normalness.
Still Alice is a 2014 drama based on a novel by Lisa Genova. The film, written and directed by Richard Glatzer and Wash Westmoreland, documents the fictionalized character Alice Howland, a linguistics professor at Columbia, who is diagnosed with early-onset Alzheimer’s. Through her daily worsening condition, we see her struggle with everyday life and with her family. The independent film won several awards, including an Oscar for Best Performance by an Actress in a Leading Role (Julianne Moore).
The film impacted me because my late grandmother had Alzheimer’s Disease. My perception of the disease is colored by my perception of her and of my dad’s relationship to her through the disease.
My first impression of the film was its authentic representation of Alzheimer’s. Its creative team was sensitive to accurately portraying its impacts both on Alice and her family. If nothing else, the film begins an honest conversation, one that I want to pick up.
Perhaps the most poignant and notably disabled scene in the movie is this:
Alice excuses herself to fulfill the most basic human routine: to use the bathroom. But she can’t find it. The scene is heartbreaking and conveys the fear of being lost and the fear of humiliation.
I think the fear runs deeper. It’s a fear of defending one’s own existence. It’s a fear that the people close to Alice will look down on her, will pity her, and will think less of her, even if only unintentionally due to her disease. In the trailer, Alice says “I am not suffering. I am struggling.” That distinction is key. When we place the value of humanness on our ability to conform to social normalness, any divergent characteristic makes us less human.
For this reason, we tend to hide our weaknesses. We don’t want people to know we’re lost or we’ve forgotten their name because somehow society has created a world in which our weaknesses make us less valuable as people. But it is this very struggle, not our suffering, that defines who we are. No story deserves our pity. But every story deserves our ear.
And so the film presents Alice’s struggles. We see signs taped up on her walls and scattered across the house that point to the bathroom. And we see her dead man’s switch: questions on her phone about the quintessential memories that she refuses to live without—the names of her family. If she cannot answer those questions, her instructions lead her to overdose and kill herself.
The film wrestles with a giant existential question. What constitutes life? If Alice forgets who she is—the memories that make up who she loves—is she still Alice? Moreover, the film places the conversation in language itself. She is a linguistic professor who forgets language. The words she uses to communicate lose meaning. She forgets names and places and common objects. Is language—our communication with those around us—part of who we are?
This is the last scene of the film:
Her daughter is reading Tony Kushner’s Angels in America. And I love those last few sentences: “Nothing’s lost forever. In this world, there’s a kind of painful progress. Longing for what we’ve left behind, and dreaming ahead. At least I think that’s so.”
Through it all, she’s still Alice. Alice isn’t in the past. She’s living. And who she is now is still her, with her daughter, sharing love. We’re creatures haunted by time, living somewhere between past regrets and future hopes, as Kushner so beautifully envisions. But it’s neither our past nor our future that defines us. We just are. Nothing’s lost forever.
It’s tempting to see the deterioration as losing oneself. As Alice forgets who she is and who the people are around her, we wonder at what point she’s still her. But the film presents us with a beautiful picture. In the final scene, Alice isn’t her past. She’s changed. And who she is then is exactly who she is—not in comparison with who she was or who she will be. She still has the capacity to love. She still has the capacity to be loved. And that’s it, really. Until we die, we just exist, no better or worse than anyone else. Just differently. Through her struggles, and perhaps because of her struggles, she’s Still Alice.