I was just reading the article "What Counts as Help"by Maryann Cusimano Love in the magazine America (November 20, 2006 issue). The article talks about the importance of of affirming the fundamental human dignity of those we help and not dividing the world into victims and helpers. She emphasizes that we need to move "beyond ignorance and apathy concerning others' needs". Therefore, the help we give needs to be tailored to the help needed by the person or group.
As a person with a disability, I am touched by these insightful words. When I ask for help, it can get complicated. Some people simply do not know how to separate out the fact that I can be independent and yet , bottom line, require help with certain physical tasks. Some assume the minute I ask for help with a task that I am a type - the type that is dependent. Without any knowledge of what a quadriplegic is, they assume that I go around (as well as other people with disabilities) and demand help when I don't need it. This is insulting and degrading .
When I try to delineate the kind of help I need in order to accomplish my daily tasks, including working, I am sometimes greeted with the response that the person knows better than I do what I need. Some people don't say this out loud, but they act in kind. I find myself in a position where the person is doing tasks that I can do or, worse yet, refusing to do things I can't and lecturing me as to the importance of self reliance. As well meaning as a person might be, being called lazy when you are paralyzed just doesn't cut it.
I am blessed with an aide who knows the importance of tailoring the help I need and efficiently streamlining during the allotted time we have. However, I can't emphasize enough how rare these traits are in a helper.
I believe it is part of our spiritual journey to learn to call each other by name and recognize each others' real needs. Offering empty gestures does not suffice when we wish to live in true community with each other.
2 comments:
This is a great post. I have a few helpers who really do know how to be my legs, etc. But many people confuse physical impairment with mental impairment and do not listen to the person to find out what help she needs. Keep writing about this, it's very important for inclusion. I am a doctor with a disability and deal with many helpers in many settings. Good blog.
I find this topic hard and I think you're gutsy to write about it. Most people who help me do what they think is helpful, not what I want or need. I've given up trying to explain stuff and mostly struggle. Hope people read this and understand better what it's like to depend on others.
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