The Intersection of Care and Need
I remember a disagreement between two of my graduate faculty advisors. Should people who provide care be called caregivers or care workers? This argument reflects a longstanding debate regarding care. There are those who emphasize the work in the caring and those who emphasize the caring in the work. I’ve always interpreted this, to some extent, as debates over whose needs should be emphasized, the care providers or the care recipients?
But it hasn’t been until recently that I’ve begun to understand how closely these needs can intersect. I have yet to bear significant financial and health costs associated with raising my daughter, but the emotional price is becoming clear. Generally, I’ve defined the emotional costs of care work as higher rates of depression among long term care providers, which are triggered by the heavy demands of care. But as a parent of a child with a cognitive disability, the emotional costs are related to things I never really imagined. I’m not depressed. And while I spend an inordinate amount of time trying to hurl myself through varying bureaucracies, from hospitals to the welfare system, what causes the most pain and stress, the thing that keeps me awake most at night, is triggered by the realization that people will be cruel to my daughter as she grows up. Yes, most children have to deal with cruelty, but my daughter will have to deal with more of it.
Negative reactions to those with cognitive disabilities are often strong and seemingly unconscious. President Obama’s slip regarding the Special Olympics is a striking example. He clearly felt badly and I would guess that if he had thought about it–for even a minute–the comment never would have slipped through his lips. Indeed, he apologized profusely, without caveats. But the sentiment is lurking beneath the surface—even among the best of us. And even more concerning was the number of times I heard others excuse the comment by arguing that he was being self-deprecating. The fact that it was self deprecating is not going to make that kind of comments any less painful for my daughter.
So it is here where I’m finding that my needs and my daughter’s needs are one in the same. When she feels pain, I feel that pain. I think this blurring is part of what underlies the stress that many care providers face.
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