CW: Cancer & Poverty
Yesterday, I watched The Paper Bag Plan. It’s a fictional film, but the topics it discusses—caregiving, disability, independence, and the impossible choices families face—are all too real. The film follows Oscar, a father diagnosed with colon cancer, and his disabled adult son, Billy. As Oscar’s health declines, he encourages Billy to be more independent, even helping him find a job.
As a disabled person myself, the film hit me harder than I expected. Many of Billy’s experiences felt like mine—especially when he talks about wanting his own place. I moved out when I was 20, and having my own apartment has been a huge part of what independence means to me.
However, like Billy, I want more than independence at home. I want to have a career. One day, I hope to work as a writer or in marketing. I know I’m a hard worker, and I want the chance to contribute to the workforce.
Unfortunately, achieving that dream is far more complicated than it should be. It’s not that I don’t want to work. It’s not about what I can do; rather, it is about a system where every step toward building a future comes with the looming fear of losing the services that make that future possible.
Many disabled Americans rely on Medicaid’s home and community‑based services. I rely on Personal Care Attendant (PCA) services. My PCA helps me with daily tasks like bathing, getting dressed, and using the bathroom. Without PCA services, I would be unable to leave my home, let alone work.
Unfortunately, there are strict income and asset limits for Medicaid. In general, you can’t have more than $2,000 in assets. There are workarounds—ABLE accounts, Medicaid buy‑in programs, special needs trusts—but each one has its own maze of rules and restrictions.
While these programs are essential for survival, they also force disabled people into incredibly difficult situations. To keep the services we depend on, we have to live in poverty. We are forced to accept limits that no nondisabled person would.
Many other moments also reminded me of myself. For example, when Billy learns to transfer from his wheelchair independently. It’s a brief moment. It really moved me, because I know exactly what that feels like.
One day in June of 2019, I spilled strawberry yogurt on my shirt while I was home alone. Rather than waiting for my mom to come home, I figured I’d try to change into a clean shirt by myself. That might sound simple, but for me, it wasn’t.
I made my way to my bedroom, picked out a shirt, and took off the dirty one. I put the new shirt over my head—backwards, of course. I tried again. On the third try, I finally did it. I was nineteen, and I was much more excited at that moment than most nineteen‑year‑olds would ever understand. And I hadn’t given up, even when it was hard. Seeing Billy pull that off reminded me of those feelings.
The film also shows Oscar having a difficult time finding services for Billy. With every call, he gets turned away or is told to put Billy on a waiting list. That’s exactly how it feels in real life for so many of us.
The movie is fictional. However, the tightrope it walks—the paradox of wanting independence and needing support—is something disabled people live with all the time.
After watching The Paper Bag Plan, what really sticks with me is how a fictional story shows just how much this impacts real people. Billy is not a real person. Nonetheless, people like him—and like me—are trying to build lives that aren’t boxed in by limits other people and systems impose on us.
The film was a powerful reminder that our stories matter, and that even if it’s slow, change can happen when people truly listen. I keep hoping that one day disabled people won’t have to choose between being independent and surviving, and until then, I’ll keep fighting for a world where our futures aren’t treated as plot twists, but as priorities.
Sources:
Romig, Kathleen, et al. “The Case for Updating SSI Asset Limits.” Center on Budget and Policy Priorities, Center on Budget and Policy Priorities, 25, July 2023, http://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits?fbclid=IwAR0wZj-zM_VqbPoQ4RV3WZUbOBCKVbnxXlV9lJeWo4GLEVAx2EomA5klzoo_aem_AfEqv7yxyHvw-DLrwMkFZ4LovFDDWokEDXSN5qdX6LwdCd85JZbF0gQkswCdVv1LpVA.
The Paper Bag Plan. Directed by Anthony Lucero, performances by Lance Kinsey, Cole Massie, and Ravi Kapoor, Blue Sun Pictures, 2024. Prime Video.