The relationship between a person with a disability who receives personal assistance and the person who provides it is a unique and powerful relationship. It can cover a broad range of emotions for everyone involved, some positive, some not so.
The assistance relationship can potentially fall into being hierarchical—one person in control, the other feeling controlled. It could be the person with the disability as the boss, directing an employee (who could be fired) or simply being demanding and rude. It could be a family member or a hired assistant insisting on how things should be done, essentially forcing the person with the disability into a passive role. There are infinite permutations of this relationship, all with potentially profound impact on each person, but especially the person with the disability whose belief in his or her own potential can be prone to the influence of others.
The ideal and ultimate goal is to feel equal and respected in all our relationships. This is the innate desire wired into all of us. These qualities hang poignantly in the balance in the caregiving interaction.
Oops, there’s that word: “caregiver.” It’s a problem from the get-go. The implication in the very word is that someone is being “taken care of,” putting that person almost unavoidably into a passive mode—actually or psychologically. Whether you’re consciously thinking of it in this way or not, such language bores deep into the psyche. The language we use informs our very beliefs about what disability means and how far out we set our imagined limits of what is possible. It can influence everyone’s sense of how substantial the receiver’s true potential is for independence.
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