Does It Serve Me Well?

I came across a question reading Confessing Queer. Does the culture in which I find myself serve my mind, body, and heart? The quick answer is no, but I believe the longer explanation bares elucidation.

In this case, culture refers to what we as a people believe, the standards by which we collectively judge the world around us, and what we expect from individuals. We are an industrialized, productivity-oriented, evaluation based on results society where what you can do is highly valued along with how you look. Though pluralistic, democratic principles permeate our social fabric so that even outside of government, majority rules.

Does this mindset positively impact my mind, body, or heart? I don’t produce, achieve expected results, or even do things in the usual, efficient ways. I look different, want different, and feel different.

Think about that for a minute. I live in a world that, by its nature, says I am of lesser value because I do not produce, am a failure since I need help, and take up valuable resources. On an individual level, a child raised with such negativity would not thrive nor would anyone expect it. How, then, is it any less damaging to an adult when her society believes it?

I am beginning to confront some painful realities and not liking it much. I tend to kick and scream my way through such a process. It is messy, unpleasant, and deepens my sense of isolation. But, well, moments of revelation come when they come and working through things happens without one’s convenience or comfort in mind.

The revelations are these: I will have medical issues cropping up routinely for the rest of my life because I am medically fragile. The things I want – either because I was taught to or genuinely want them – such as home, family, and avocation are not statistically likely. In fact, they are very unlikely. Finally, hard isn’t a word to describe a period of my life but a word that will describe the rest of my life.

Have I depressed you yet? That’s not my intent. My point is that I inhabit a specific reality that means certain things and I should really accept them so I can stop making myself miserable. Medical issues aren’t bad unless I buy into the idea that they are. It is possible to learn to want other things that are more likely. A hard life is not a bad life.

I spent years clearing society’s beliefs about beauty out of my head and heart. Somehow I seem to have left many ablist beliefs that do not serve me well. It’s time to do more than just decry them from the pages of this blog. It’s time to actually stop believing them.

Clash of Chemistry and Reality

The other day someone asked me how I know I’m attracted to another person. I realized the answer might be of interest, so here you go.
First, whether sighted or not, physical attraction comes in many forms. While you might think it’s dependent upon vision, in actuality that’s not the case. If physical chemistry were reliant upon sight, everyone would have sex with the lights on. Internet dating in the mid 1990s illustrates my point. Back then, pictures were not posted online. You did it via the U.S. Postal Service. Long before people’s images had wended their way back and forth, attractions began to grow. I’m not saying people didn’t want that visual confirmation of chemistry, but they did feel a zing despite no visual input.
For me, attraction is a very indefinable thing composed of how a person treats me, their manner in general, and how I feel in their presence. I have been known to react to chemistry after thirty seconds. Or less. People give off some unnamable thing that I perceive and interpret without conscious thought.
It’s not pheromones, which require a functional olfactory system that I do not possess. It’s not dependent upon touch for it often happens prior to physical contact. It’s not even a case of being so desperate that I’ll go for anyone who treats me well. Something happens on dare I say animal level and my hormones start parting.
Now, here’s the interesting part. That chemistry can fade in the face of actual physical exploration. People feel….. odd. It might be because I don’t go around feeling people regularly. Perhaps I get an image in my mind and the reality doesn’t match. Possibly I have emotional chemistry with someone but not physical. Whatever the case, it’s rather disconcerting.
Imagine, for a moment, what happens. I am attracted to some person and it seems to be mutual. Eventually, things go from hand-holding to more. The first time I touch someone’s face can be kind of a turn off. So, there I am, having my first physically intimate experience with someone and while they are touching what they have already known through sight, I’m getting my first “look.” Should it not be what I thought, then I’m suddenly torn between how it felt five seconds ago before initial contact and how I feel at the present. Totally ruins the moment for me.
There has only been one time in my life where I didn’t have chemistry with someone at first meeting rather growing over time. To be precise, about three years. Suddenly, my hormones woke up and started paying attention. Surprised me.
The great part of that experience was discovering feelings evolving in such a way somehow become independent from the physical. It’s THIS person under my fingertips and that feeling can overpower the actual sensory input.
I’ve unfortunately come to the conclusion that if I don’t want that moment of dissidence between the intangible chemistry and reaction to the physical reality, then I have to wait until I know I will be touching someone for whom I have strong feelings.

Why Not Saucer?

If you are familiar with The Spoon Theory of Chronic Illness, then you probably already see where I’m headed.
A few days ago, a new friend was trying to be supportive of me and my forgetfulness. Unaware of my chronic illness and the role it plays in my life, she said, “You just have a lot on your plate.”
I thought, “Plate? It’s more like a saucer.”
I am currently quite taken with this concept. Plate has been used for quite some time to describe an imaginary space that encompasses everything going on in an individual’s life. Of late this colloquialism is growing in popularity and I believe my saucer variation can accomplish much.
A change from plate to saucer will not be particularly confusing as the two are so clearly related. There is a comprehensible implication that something is smaller and unlike with The Spoon Theory, requires little explanation. In fact, I can foresee using it without anyone even realizing I’ve done something unusual.
While a subtle change, I anticipate great impact. With the substitution of one word, I am saying I have less resources available to handle whatever is happening in my life. It acts as a reminder of my chronic illnesses existence and its effect. People might just hear a word, but it has much meaning attached.
Part of the appeal is an economy of effort for I will use less energy to convey a complicated concept that often requires significant explanation. I can even shift the meaning easily by saying sandwich plate. I’m loving it. Besides, given the culinary theme, it fits right in with The Spoon Theory.

Flummoxed by Niceness

People are nice to me and my reaction isn’t pleasure, appreciation, or even embarrassment. Nope, I become utterly baffled. If you think that sounds odd, try living with it.
It all seems to have started with the advent of the prosthetic eyes. Suddenly total strangers were doing weird things like not freaking out, not ignoring me, and even (gasp) being friendly. Coming away from a cafe counter, I might actually be happy instead of cringing. Once I even think I got special treatment not because I’m disabled but because the man was flirting with me. With that one, the earth shifted on its axis and I felt the ground move.
After years of being treated in a certain manner, I honestly have no idea how to assess what is happening. This might seem like a thing to appreciate given that I complain constantly about my frustration with people’s less than stellar behavior. Maybe I’m distrustful by nature, but when people behave in inexplicable ways, I start to fret. What am I missing? . Will it last? If I don’t understand it, how do I know everything will be alright?
I am expert at dissecting other’s odd behavior able to discern nuances and glean motivation from an initial greeting lasting ten seconds. Vast experience has honed my instincts and I am able to know how I should react. When a person holds out their hand and I don’t realize it until someone tells me, I know to make a joke to put the other person at ease. If wait staff speaks to my companion about me, I easily insert myself into the conversation in a way that forces the person to interact with me. These are reactions akin to the reflexive jerk of a knee when tapped by a rubber hammer.
In the past, pleasant behavior was easy for me to decipher: the person had prior experience with disabled folks, excellent customer service training, wanted to be friends, and/or rarely wished for something romantic. Everything was simple and clear because it happened less often and the behavior only had a handful of possible motivations.
In contrast, now people are friendly just because. Lacking experience with such behavior, I repeatedly try to fit actions into the categories I know but without success. Instead of letting the puzzle go unsolved, I keep going over it in my mind trying to find some clue I’ve overlooked.
Do you know how frustrating it can be to not understand why someone is being nice? I guess many of you are used to people behaving in such a manner. Maybe it’s how you would feel if people suddenly began gazing over your right shoulder whenever they spoke to you. It feels that arbitrary and inexplicable.
I hope for the sake of my sanity that I learn to read niceness with the skill I can apply to odd behavior. Unfortunately that knowledge took years to acquire and I don’t have the patience for that prolonged process again. I also lack the brashness of an early twentysomething that allowed me to directly ask people why they did what they did. I think I need a native guide or something. Volunteers?

Forget Kindness. Try Fairness.

I have always noticed and assess how I feel when someone helps me. Probably at the moment of my birth I had an opinion about the person catching me. In this blog, entries such as Is Approach More Important Than Act? and Why I feel How I Feel are just two cases where I dissect helping behavior and my feelings. Apparently my head is denser than lead because it has taken thirty-nine years to realize it is a question of kindness versus fairness.

Yesterday morning I attended a meeting of people who facilitate the discussion groups at my local LBGT Center. As you might imagine, that room was overflowing with kindness which is why I was shocked at the discussion surrounding a disability issue. A member of one discussion group seems to have a mental health condition whereby they are frequently off-topic and obsessed with Hot Pockets. I pointed out that this behavior could be a result of a cognitive disability beyond the person’s control and the facilitator could use some simple techniques to refocus the speaker. The touchy-feely response was that this person needed help and support beyond a peer facilitator’s scope and should be directed to counseling as an alternative to attending the group. Accommodating a trait based on disability in order to include a disabled person was rejected mostly because it didn’t “help” the Hot Pocket Obsessed Person with their perceived issues. I wanted to slap the kindness out of them and replace it with a sense of fairness.

At first distinguishing between an act of kindness and something done out of a sense of fairness might seem difficult. After all, both are based on an individual’s subjective assessment of what act fulfills the dictates of that particular situation. Being kind, however, involves going beyond what is necessary to do that which is exceptional. It is an emotion-based behavior revolving around empathy, sympathy, and sometimes commiseration. In contrast, fairness means simply doing whatever is needed to achieve a desired balance. The differentiating element is whether the person is doing what is required or choosing to do something extra, which means that kindness is optional and subject to personal whim.

When people help me out of kindness, I find myself gritting my teeth. How, exactly, can I take exception with a behavior motivated by such altruism? “Thank you for helping me shop for a gift, but becoming irritated when I wanted a specific color that was hard to find wasn’t helpful.” That would be an ungrateful response because the person was going above and beyond the call of duty. The same response given to someone acting upon a sense of equity transforms the statement into a topic to discuss and resolve.

I’m not disregarding kindness entirely. Obviously there is a place in the world for behavior based on empathy and a desire to be nice, but when an issue of disability accommodation becomes a matter of kindness, it relegates us to second class status. Suddenly the whimsicality of kindness dictates whether or not we receive what we need to fully participate in society. Far better to have it be an issue of equity that can be debated; a matter of logic and reason rather than the whim of an individual heart.

Today I joyfully participate in the sixth Blogging Against Disablism Day. Many members of the blogosphere, whether disabled or not, are letting their voices be heard on all aspects of what it means to be disabled. Go forth and read their contributions.