Last week when I discussed boundaries, I concentrated on the struggles with strangers. This week, I’ll be tackling — or, rather, running over with my wheelchair — the boundaries that arise between established relationships, especially in relation to giving and receiving care.
First, disabled people often have different relationship dynamics with their able-bodied and neurotypical loved ones than between people that don’t have disabilities.
Because of the nature of disabilities and the general inaccessibility of the world, disabled people often need extra help in their day-to-day lives. This can come in the manner of opening doors for people, helping dress someone who has mobility issues, ordering for someone with anxiety or problems speaking, taking care of household chores or a variety of other tasks.
Some disabled people need help with just a few tasks, and others have a full-time caregiver. Caregivers can be hired, a friend, family member or significant other.
Especially if a loved one is the person that assists you, special boundaries are needed. For example, a disabled person might need help getting dressed, but might want to keep a level of independence from their significant other and do bathroom duties by themselves, as well to maintain a sense of intimacy.
A caregiver over-helping can feel like they doubt the abilities that you know you can perform. Drawing the line of what abilities you can do can depend on the day for disabilities that vary.
Communication is vital to understanding the boundary between a caretaker and a disabled person. That person can’t see inside your head and lives a very different life than you in terms of limitations, and they can’t be expected to understand your exact experiences without proper communication.
Another complexity to receiving assistance is a level of guilt, especially people who are new to receiving accommodations. For a disabled person, it can feel like a burden to be asking for too much. It’s hard for anyone to admit you need help, but that feeling is increased by the magnitude of help disabled people can need. This isn’t everyone’s experiences, but I know for me this can often ring true.
Finally, it can be hard to keep up good connections with your able-bodied and neurotypical loved ones due to a lack of time and energy. People with depression, anxiety or other mental illnesses might need to take more self-care days to keep up their mental health. People with variable pain or fatigue might need to cancel plans last minute to take care of themselves.
When disabled people can’t hang out as often as your other friends, it’s important to still remember us. Try to text us as often, even if we don’t respond right away. Try to invite us to gatherings, even if we can’t always say yes. And, please, try to be inclusive to the events you invite us to.