Helping is complicated for everyone involved. Is the want-to-be helper going to offend the potential helpee simply by offering aid? If the helpee agrees, will they get the assistance they need? Are there strings attached to the proffered help? Will the helpee even appreciate the efforts of the helper? Even if all parties enter into it with the best of intentions, and I am limiting this discussion to those circumstances, there are so many ways it can go horribly wrong.
The number of times I have received help is greater than the sum total of water drops in the ocean. For me, it is a fact of the reality of disability and so too are the consequences of help gone wrong. One particularly thorny aspect of accepting assistance is the role of individual preference and opinion of the helpee. Here I am speaking of personal whim, not that based on concrete need.
For example, I might need help finding a specific item in the grocery store and ask a random stranger for aid. Do I then have the right to drag the person hither and yon in search of the exact brand of butter I prefer? If I have asked someone to guide me, should I be criticizing their guiding technique?
To the helper, a helpee having preferences or opinions can at the least seem like ingratitude. The helper is taking time out of their day to be of assistance, but that is not enough. They must cater to the whims of the person as if once they've agreed to help they have become an indentured servant. A brand of butter cannot be that crucial. The nuances of guiding cannot be critical over a short distance. Shouldn't the person asking for the help take steps to minimize the amount of effort for the helper? Appreciation and not taking advantage of somebody seem like reasonable expectations to have.
At the same time, we all have predilections. In asking for help, has the potential helpee also relinquished the right to likes and dislikes? If I want a red water bottle, should I be resigned to buy a blue one because red meant sorting through the contents of a shelf? Are those of us routinely in need of assistance destined to never quite getting what we want?
Because of my disabilities, I have a highly developed sense of need versus want. With energy limitations, I must focus on what is important. Needing assistance which can be in short supply, I have to set priorities. What I need forms a longer list than that of a TAB. I have requirements related to food allergies, location of objects, alternative formats, transportation, organization for location purposes, websites, and more that are not need-based considerations for the average TAB. All of this boils down to my wants not often appearing on my personal radar.
So, when I have a desire combined with the energy and assistance needed to fill it, I get picky. Maybe it's a sort of territoriality. Maybe it's about the way I must approach my life in order to be a happy person. Maybe I'm just difficult.
When those helping me have behaved as if my wants are not important, I have felt like my need for aid means I should not expect the privilege of preference. This makes me angry because it seems like a reflection of the devaluation I experience continually. My desires being superseded by the convenience of someone who consented to help feels like the same old second class citizen status disabled people have been trying to shatter for years. Do I truly matter that little?
Honestly, I'd rather people said that straight to my face in clear language. "You don't matter as much as I do because you are disabled and need my help." At least then everyone would be on the same page. Instead, people who have consented to help get irritated by me having wants. I am often tempted to ask them if they deny themselves what they want too.
In availing myself of help, I do all the right things – ask for what I need with sufficient information so the person can make an informed choice, say please, express appreciation, and for friends bestow random baked goods upon them. Is it too much to believe what I want should matter?
Showing posts with label dependency. Show all posts
Showing posts with label dependency. Show all posts
Wednesday, December 1, 2010
Wednesday, July 8, 2009
Independent? Yeah, right.
In honor of the 4th of July, some of my thoughts on independence.
Remember all those “rags to riches” stories we covered in high school? They represented the pull yourself up by the boot straps mindset that characterized the United States in its infancy. The American dream immigrants absorbed was that if they worked hard enough and relied upon themselves, they could achieve prosperity. And to many that was the case.
That self-reliant mentality of determination has become a major thread in the fabric of our culture. We want our welfare mothers to stop needing governmental support by sheer force of their will. WE want our homeless to find jobs and get themselves off the street. And, of course, we still have “rags to riches” stories such as the Will Smith film “Pursuit of Happiness.” Nothing captures our attention more than someone triumphing over monumental obstacles propelled forward by the force of their own spirit to achieve affluent success. Nothing garners our censure more than somebody who wants aid we have judged they don’t need.
Like many disabled people, I was raised on the notion that I should always strive for independence needing as little as possible from others. To a large extent this has served me well whether in school or life. But – and you knew one was coming – there is a flipside to it that gets in my way.
I loath asking for help. Actually, I feel as though I have failed at being independent even when I am simply asking to be told when the walk light turns green. I should be able to take care of myself without needing anything. Ever. Furthermore, when I ask for help, I know I am perpetuating the idea that disabled people are helpless. So, not only am I flunking Independence 101 but I’m screwing up the world for other disabled people. Ridiculous? Yes. I never claimed to be rational 24/7.
I used to console myself with the concept of interdependence. Within the disabled community, the argument is made that nobody is truly independent as people rely on others to grow the food they consume, make their clothing, build cars… The list goes on. Disabled people simply need less common forms of help. The human race is interdependent forming a giant network where one person fills another’s needs and that person goes on to sustain another. No individual could exist in total isolation. Even Tom Hanks needed Wilson. So, if I need help that’s just a part of being human rather than a sign of weakness or failure.
Lately this consoling line of thinking has no power to sooth me. Humans are interdependent and, like the rest of you, I need somebody to harvest the grain and package it for preservation. It seems, however, that within a framework of interdependence, people are mandated to be independent. Nobody is expected to survive without grocery stores and washing machines, but they are required to not need rides to the vet, assistance with grocery shopping, a guide across a crowded room etc. I fall into the category of dependent and it makes me scream. Loudly.
People sometimes try to make me feel better by saying something like, “But, Jen, you can’t see. Of course you need help. Nobody expects you to…” And there is the dreaded word – expects. I don’t want there to be a set of expectations for everyone else and then one for me. Down that road lies my insanity and a set of different and ultimately lower expectations for disabled people. Obviously it’s beneficial when people don’t assume I can see. If it stopped there, that would be fine. However, from that point people tend to make additional assumptions like I cannot give driving directions, cook a meal, or pass physics. Such conjecture results in situations like having to fight to take physics in high school. Besides, who wants to be thought of as less competent? Who wants to constantly need to prove themselves capable? Definitely not me.
I have no idea how to resolve any of this. My logical brain knows there is nothing inherently wrong with needing help – with being dependent on others to survive. Yet I cannot escape my socially ingrained feelings about how if I just tried a little harder, exerted just a little more willpower, pulled on my bootstraps with more strength I could pass Independence 101 and be considered successful.
Remember all those “rags to riches” stories we covered in high school? They represented the pull yourself up by the boot straps mindset that characterized the United States in its infancy. The American dream immigrants absorbed was that if they worked hard enough and relied upon themselves, they could achieve prosperity. And to many that was the case.
That self-reliant mentality of determination has become a major thread in the fabric of our culture. We want our welfare mothers to stop needing governmental support by sheer force of their will. WE want our homeless to find jobs and get themselves off the street. And, of course, we still have “rags to riches” stories such as the Will Smith film “Pursuit of Happiness.” Nothing captures our attention more than someone triumphing over monumental obstacles propelled forward by the force of their own spirit to achieve affluent success. Nothing garners our censure more than somebody who wants aid we have judged they don’t need.
Like many disabled people, I was raised on the notion that I should always strive for independence needing as little as possible from others. To a large extent this has served me well whether in school or life. But – and you knew one was coming – there is a flipside to it that gets in my way.
I loath asking for help. Actually, I feel as though I have failed at being independent even when I am simply asking to be told when the walk light turns green. I should be able to take care of myself without needing anything. Ever. Furthermore, when I ask for help, I know I am perpetuating the idea that disabled people are helpless. So, not only am I flunking Independence 101 but I’m screwing up the world for other disabled people. Ridiculous? Yes. I never claimed to be rational 24/7.
I used to console myself with the concept of interdependence. Within the disabled community, the argument is made that nobody is truly independent as people rely on others to grow the food they consume, make their clothing, build cars… The list goes on. Disabled people simply need less common forms of help. The human race is interdependent forming a giant network where one person fills another’s needs and that person goes on to sustain another. No individual could exist in total isolation. Even Tom Hanks needed Wilson. So, if I need help that’s just a part of being human rather than a sign of weakness or failure.
Lately this consoling line of thinking has no power to sooth me. Humans are interdependent and, like the rest of you, I need somebody to harvest the grain and package it for preservation. It seems, however, that within a framework of interdependence, people are mandated to be independent. Nobody is expected to survive without grocery stores and washing machines, but they are required to not need rides to the vet, assistance with grocery shopping, a guide across a crowded room etc. I fall into the category of dependent and it makes me scream. Loudly.
People sometimes try to make me feel better by saying something like, “But, Jen, you can’t see. Of course you need help. Nobody expects you to…” And there is the dreaded word – expects. I don’t want there to be a set of expectations for everyone else and then one for me. Down that road lies my insanity and a set of different and ultimately lower expectations for disabled people. Obviously it’s beneficial when people don’t assume I can see. If it stopped there, that would be fine. However, from that point people tend to make additional assumptions like I cannot give driving directions, cook a meal, or pass physics. Such conjecture results in situations like having to fight to take physics in high school. Besides, who wants to be thought of as less competent? Who wants to constantly need to prove themselves capable? Definitely not me.
I have no idea how to resolve any of this. My logical brain knows there is nothing inherently wrong with needing help – with being dependent on others to survive. Yet I cannot escape my socially ingrained feelings about how if I just tried a little harder, exerted just a little more willpower, pulled on my bootstraps with more strength I could pass Independence 101 and be considered successful.
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