As a disabled person who relies on caregivers every day, I believe that needing care means more than helping me do tasks I can’t do for myself. It means acknowledging my individuality and independence and respecting my boundaries.
Most caregivers start out wanting to genuinely help. That help can make an enormous difference in someone’s life. But some caregivers never really see the person they’re caring for as a separate individual, with his or her own preferences, opinions, relationships, and goals.
For example, one former PCA I had loved going to thrift stores. She would spend hours browsing every aisle looking for bargains and hidden treasures. And there’s absolutely nothing wrong with thrift stores. The problem was that she couldn’t seem to understand why I didn’t enjoy it.
Because she enjoyed going to thrift stores, she assumed I would enjoy it too. When I expressed disinterest, it seemed confusing to her. What she didn’t recognize was that her interests were her own and mine were different. I wasn’t being difficult or ungrateful. I simply didn’t share her enthusiasm for spending an afternoon wandering through a thrift store.
Looking back, the thrift store wasn’t really the issue. It was part of a larger pattern. During my freshman year of college, she made fun of my lunch. I had chosen a grilled cheese sandwich and butternut squash soup. She looked at my meal and commented that it was “boring.” It was embarrassing and infantilizing.
At 19 years old, I was perfectly capable of deciding what I wanted for lunch, just like every other college student in the dining hall. Nobody else was being questioned or teased about their food choices. The student sitting next to me happened to be eating two bowls of frozen yogurt, and nobody was asking him why he liked it or suggesting he should have chosen something more nutritious.
I remember politely pointing this out. The issue wasn’t whether my lunch was exciting enough. The issue was that my choices were being treated as something open for debate in a way that other students’ choices were not. It was one more example of how disabled people are sometimes viewed through a different lens, where ordinary decisions become subjects of debate and judgment.
She also had difficulty maintaining professional boundaries. She would ask to borrow money from me. She wanted to meet my friends and become involved in parts of my social life that had nothing to do with her role as my caregiver.
Unfortunately, I think she viewed our relationship more like a friendship than a professional caregiving relationship. But that distinction matters.
Caregivers provide support. They are not family members by default. They are not friends by default. While genuine friendships can sometimes develop naturally, the foundation of the relationship is still a professional one built around helping someone maintain their independence.
When boundaries become blurred, it can become difficult to separate the caregiver’s wants and needs from those of the person receiving support. Their interests can begin to overshadow yours. Their opinions can carry more weight than they should. Their expectations can start shaping your daily life. What seems harmless on the surface can gradually chip away at a person’s sense of autonomy.
Perhaps this is one reason I enjoy being alone in my room. Nobody criticizes my choice to watch The Middle, Inside Out, or The Big Bang Theory, or to listen to The Beatles. Nobody asks me to justify why I enjoy them or suggests I should choose something else. For a little while, I can simply enjoy what I enjoy without commentary, judgment, or the feeling that my preferences need someone else’s approval.
For disabled people, these issues can be especially complicated. We often depend on caregivers for help with daily activities. When someone helps you get out of bed, prepare meals, or get to appointments, addressing uncomfortable behavior can feel risky. There is always the worry that speaking up could create tension in a relationship you rely on. That reality makes professional boundaries even more important.
Needing assistance does not mean giving up individuality. It does not mean giving up privacy. It does not mean becoming an extension of someone else’s personality, interests, or social life. It does not mean surrendering the right to make ordinary choices without commentary or judgment.
The best caregivers I’ve had understood this. They respected my preferences even when they didn’t share them. They understood that my friendships belonged to me. They never put me in the position of managing their financial problems. Most importantly, they recognized that their role was to support my life, not become the center of it.
Good caregiving isn’t just about showing up and completing tasks. Sometimes the most valuable support a caregiver can provide is simply remembering who they are helping.