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?