Gone Fishing

Actually, if I were willing to brave the insane cold, I could be fishing since I’m staying on a lake.

This blog will be unattended from now until the end of the year. I am doing
the family holiday thing. Catch all of you in 2011!

I Have A Dream — For Help

This entry is a companion piece to The Privilege of Preference.

As complicated as help is in the big, wide world, it is even more convoluted in my own mind. In my childhood, I somehow absorbed the notion that people would not like me if they had to routinely help me. I bought into the idea that asking for another’s aid is inconveniencing.

In addition, I feel a strong compulsion to be grateful for whatever – and I do mean whatever – help I receive, regardless of whether it’s useful or detrimental. Expressing preferences becomes a tangle for who gets to want when someone is helping them get what they need? While I rationally know all this is absurd, still it lingers for things learned over time and reinforced by experience are hard to alter with logic.

Consider some of my routine experiences: I have been walked to the wrong place and left there not knowing it. I have been given inaccurate information because the person thought they could get away with not looking since I can’t see them. I have been treated badly because I expressed a preference in a seat at the airport. I was flatly ignored when I told a restaurant their Braille menu was unusable. I was the recipient of annoyance because I wanted something to match a specific color.

What I have learned from experience is in constant conflict with my belief that I should be treated with respect. A strong sense of fairness grapples with the undeniable reality that I need help and getting it must come first. Whenever I need to ask for assistance, all this comes into play.

The stronger my sense of self-worth becomes the angrier I find myself. Disrespect of my needs makes me dig in my heals about respect for my wants. It would be easy to dismiss my conflict, anger, and obstinacy by declaring me emotionally messed up. While that might be the case, I challenge any TAB to experience what I do on a regular basis and not have similar baggage.

Before I even consider asking for help, I run through a mental list: Can I do this myself? Can I find somebody who will barter favors? Who should I ask this time around? How do I ask so that I know they will refuse if it’s a hardship? How do I arrange things to minimize the effort someone has to invest? Only after I have waded through all these questions and struggled with my own issues do I seek aid. Even after all these years, it still stresses me out. Heaven help me if it is somebody I’ve never asked before.

I don’t think people realize the thought and preparation that goes into me requesting assistance. Or, well, I like to think they do not comprehend any of it given some of the ways they behave. If people acted as they sometimes do knowing all my prior groundwork, it would say things about humanity I simply refuse to believe.

In my dream world, help is offered willingly with no expectation of gratitude and a commitment to the helpee receiving aid that is what they want and need. In return, helpees would express appreciation and make clear what helping means in terms of time and effort. Assistance would not be offered out of obligation or when resentment is present. A “thank you” would end each interaction.

Help is an opportunity to do something good. Why can’t it be that simple? A chance to be kind. A chance to show you care. A chance to be a positive force in another’s life. A chance to live up to human potential.

I Wish Happiness

When I find out somebody is pregnant and want to wish them luck, I say, “I hope you have a happy baby.” Though the typical blessing is “healthy,” I refuse to say that because I firmly believe after years of experience that health is not a guarantee of or required to achieve happiness. Helpful? Yes. Necessary? No.
Happiness is one of those nebulous concepts that we know when we feel it, but cannot define in concrete words. Moreover, it is not restricted to one specific feeling rather a term that covers multiple distinctive emotional states. Between the different kinds, comparisons can be made. Euphoric joy is better than satisfaction, both superior to contentment, yet all encompassed by the word happiness.
For a long time, happiness wasn’t even a state on my radar. I was too busy being miserable about my chronic illness, wishing it would go away, and planning for the great life I would have when. Constant yearning unfulfilled is pretty much happiness toxin.
Finally, it dawned upon me that healthiness was a part of able bodied culture that I had swallowed as essential to my happiness. It took time, but eventually accepting my health status allowed me to be happy. For me, it was about taking what I had and making that into a happy life. Very pioneer spirit in a weird sort of way. Don’t have a pen and paper to draw a map? Use a stick on the dirt or charcoal on birch bark. It’s about using what’s at hand to get where you are going.
And then I unthinkingly fell into the decision to work on getting healthier. It proved to be the hardest thing I have ever done in my life taxing every emotional resource I possessed. When you are focused on your health in such a single-minded way, every sign of progress or regression is noted. Each symptom is cataloged and analyzed. Did eating that food make my pain worse? Was I too drained after that hike? Did a particular supplement improve the situation? A step forward was success and a step back was failure. Given the nature of my chronic illness, I often felt failure. Life was a constant emotional rollercoaster with my health the driver.
Even though my health was a slowly rising spiral, eventually I realized I was cracking under the pressure. Multiple times I tried to shift my thinking without success. Finally, it came to me that I needed to return to making the most out of what I had fashioning it into a happy life.
So, with an improved health situation giving me more resources, I did just that. In the process, I realized something very important: health while not crucial to happiness did make it easier.
Over the past year, my health has been all over the map, yet I would not hesitate in saying this has been the happiest year of my life. I haven’t completely sorted this all out, but I have become more convinced than ever that our cultural emphasis on health being key to happiness is total crap.
To me, the essential part of happiness is maximizing what you currently have and shaping it into something you want. Waiting for some distant day when you might feel better in order to be happy seems rather pointless to me. Then again, I do have a weird way of looking at the world.

The Privilege of Preference

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?