The Ring Theory

A while back, I came across a piece by Susan Silk and Barry Goldman that talks about how to behave in relation to another's trauma. How Not To Say The Wrong Thing. Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it. The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. Now apply this to personal trauma. The closer to ground zero, the more a person is affected by the trauma. A significant other would be close to the center whereas a next door neighbor would be further away. In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you. Instead, dump your feelings about the situation on someone even less affected than you. To those closer to the center, give love and comfort and support. And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want. That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. Obviously there are limits to this, like how long the person experiencing trauma is at the focal point. Life moves on, people adjust and eventually things shift. If your beloved cat dies of old age, you probably aren't at the center of things as long as you might be if your beloved cat was hit by a car at age five. Degree of trauma matters in terms of duration of the complain/support rule. Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful. In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life. Make me cope with your feelings about my predicament? Go away. Decide you know better about my situation than me? It's time for a friendship vacation. Silk and Goldman do not touch upon one aspect of the situational dynamics. When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things. If you push the person away, then you lose any hope of gaining support in the future. If you tolerate the suboptimal behavior, then you open yourself to more of the same. At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it. Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. Ground zero needs to be about the trauma not drama. Offer love, support, foot rubs and pot roast. Refrain from offering up yet more for the person with the trauma to handle. Make it your unspoken gift to them. How Not To Say The Wrong Thing. Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it. The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. Now apply this to personal trauma. The closer to ground zero, the more a person is affected by the trauma. A significant other would be close to the center whereas a next door neighbor would be further away. In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you. Instead, dump your feelings about the situation on someone even less affected than you. To those closer to the center, give love and comfort and support. And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want. That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. Obviously there are limits to this, like how long the person experiencing trauma is at the focal point. Life moves on, people adjust and eventually things shift. If your beloved cat dies of old age, you probably aren't at the center of things as long as you might be if your beloved cat was hit by a car at age five. Degree of trauma matters in terms of duration of the complain/support rule. Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful. In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life. Make me cope with your feelings about my predicament? Go away. Decide you know better about my situation than me? It's time for a friendship vacation. Silk and Goldman do not touch upon one aspect of the situational dynamics. When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things. If you push the person away, then you lose any hope of gaining support in the future. If you tolerate the suboptimal behavior, then you open yourself to more of the same. At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it. Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. Ground zero needs to be about the trauma not drama. Offer love, support, foot rubs and pot roast. Refrain from offering up yet more for the person with the trauma to handle. Make it your unspoken gift to them.

The Culture of Silence

A friend used the phrase 'a culture of silence' to refer to the normative standards of behavior, cultural beliefs, individual attitudes, social structures, and societal barriers that dissuade marginalized people from sharing their experience. Women keep quiet about sexual assault to avoid the blame and shame attached to speaking up. Transgendered people don't discuss their gender identity out of fear, at best, of being labeled "freaks." Poor people stay silent about their impoverished state so as to not be labeled a slacker, told they should just go find a job, or be pitied. In contemplating all the times I swallow my words, I have begun to wonder what part of my silence is tact and what part subtle duress? Then I came across a news clip about a student with developmental disabilities who was bullied by her teacher. What shocked me was not that such events transpired for I know such situations are common. I was surprised that the parents went to such great lengths to prove their child was not lying. Educators relied upon the

Our Sibling Keepers

Last week's entry and the resulting comments caused me to reflect upon the brothers and sisters of disabled people. It dawned on me that many may not know about or have considered the position our siblings are in whether they like it or not.

Our friends have on some level made a choice that we the disabled person are well worth the extra effort they must sometimes expend on our behalf. Our siblings have no choice about any of it. They are drafted and service lasts a lifetime.

When a disabled child enters a family, it requires extra time and effort from the parents who must go to doctors appointments, find time for physical therapy, deal with school systems, and generally learn how to help and care for their child. By necessity, as it was in my case, a disproportionate amount of time and effort often must be spent on the disabled child. For example, whenever I had surgery, Mom came with me and stayed at the distant hospital the entire time. This meant my grandparents stayed with my sisters. I also received gifts whenever I was hospitalized, didn't have to do certain chores, and received extra attention.

While my older sister seemingly understood the situation, my younger sister had problems which is completely reasonable in my opinion. She took her frustration out on my mother by acting out. It was lousy for everybody, but there was no solution to the state of affairs..

Disabled kids eventually become disabled adults. While their mature siblings are better equipped to understand the situation, new and complex issues emerge. The disproportionate attention parents must give the disabled sibling might not change in adulthood. Furthermore, when the parents become too old to provide the needed assistance, it falls upon the nondisabled siblings to help.. While you might think our social welfare system would fill in the gap, the reality is that without support from friends and family, disabled people often have a lower quality of life. Anything more than simple physical existence requires the support of family of some sort. That burden could fall on the shoulders of a spouse, but we are less likely to marry. So, our brothers and sisters must take up where parents leave off.

In addition, there are financial considerations. Any disabled adult eking out an existence on Social Security and other such programs can receive certain kinds of monetary help from others as long as it does not involve food, clothing, or shelter. When our parents die, if we directly inherit something, it could well make us ineligible for those forms of support. Most parents of a disabled child set up a specific type of trust and appoint someone to administer it. Unless you want to pay for that oversight, you appoint a sibling. To add to the complexity, parents might decide to leave more to their disabled child based on the reality that we often need more financial support. All this places more responsibility on the nondisabled siblings and can foster resentment. In addition, having one sibling control the financial status of another can be an emotional minefield.

All of this has largely gone without mention by either me or my sisters. Personally, I do not want to know if they consider their future obligations to be onerous. I also do not want to shed any light on my fears that their lives and families will prevent them from giving me the help I might need. Besides, I feel immense guilt even considering asking my sisters for aid now and avoid imagining what it might be like in the distant future.

I am certain both have discussed me with their respective spouses and consideration has been given to what it might mean for their families once my parents pass on. Our society still considers the family the first line of help and support in this arena. If I happen to have a life partner, everyone will assume that person takes on primary responsibility for me freeing my sisters. However, if I'm single and my sisters want me to have more than a subsistence quality of life, they will have to take on those responsibilities.

In writing this entry, I have gained a new appreciation for the depth and extent of the burden our society places upon the siblings of a disabled person. And, should a sibling object to these obligations, social sanction is high. I grant you assuming the responsibilities does result in social kudos. After all, if my friends are nominated to sainthood for being in my company, can you imagine what some will think of my sisters? Still, I personally think our siblings are in a lousy position. I try to appreciate what mine do for me and not ask for much.

In fact, I ask more of my friends. As with many people of my generation, my friends form a different sort of family – what many call a chosen family. I turn to mine regularly for a vast array of things. While I try to do things in return, cookies can't exactly compensate for weekly rides to yoga or being dragged for a walk by my obstinate dog.

I know I should stop thinking of myself as a burden instead embracing the notion that the people in my life are lucky to have me and what I bring to any relationship is well worth any extra effort. Haven't managed it, though.

Oddly enough, after starting this entry, I discovered on Friday Hallmark is showing "Riding the Bus with My sister." This movie explores the complexity of issues within a sibling relationship when one is disabled. If memory serves, they did a pretty good job of it.

Is Approach more Important than Act?

I have been editing my novel manuscript for the zillionth time and came across an observation by my female protagonist that applies to me. When it comes to help, I will accept from friends what I will not accept from family making me a hypocrite. I thought it might be a refreshing change to delve into one of my many flaws. I am sure rationalizations of my behavior will abound.

First, how about some examples which for the sake of simplicity, I will limit to the period I've been totally blind – about thirteen years. One summer, I was standing before a cutting board with a roasted turkey breast upon it and a sharp knife in my hand when my grandmother came into the kitchen. "Oh, Jen, let me slice that."

"No thanks, Grandma, I got it."

"It will just take me a minute."

"No, Grandma, it's fine. Besides, who do you think does this sort of thing when I'm alone in my apartment?"

"Oh, I don't know how you live by yourself. It's so amazing."

On the other hand, if one of my meat-eating friends happened to walk into the kitchen while I was hacking at a turkey breast, I might actually say, "Hey, you do this. I'm going to make a mess of it."

Now let us move to the realm of navigation. When I first lost my sight, my family was rather insistent that I travel sighted guide. I was equally insistent I go it alone. Drove my family nuts. My friends were much more flexible about this. In fact, to this day friends from that period are the only people able to guide me by words alone without me harming myself.

After a time, I went sighted guide with my friends when it was practical and my choice. Nobody ever insisted, although sometimes they explained the current challenge so I could make an informed choice. It has not been until recently that I have willingly and without resentment taken the elbow of a member of my family.

My sisters are very fashion-conscious and have taken it upon themselves to advise me about what I wear. I have been known to ask for such input, but mostly it is unsolicited. Since we have very different goals – I want it to feel good on me and they want it to look good on me – there is often conflict. The phrase, "But, Jen, we can see what looks good and you can't," has been uttered countless times. Frustration is felt by everyone involved. In the past two years, one has mostly given up and the other has taken a new approach which probably involves a lot of eye rolling, but see no eye rolls know no eye rolls.

On the other hand, I ask my friends how things look all the time. In fact, last summer we went through my entire closet and if the two advising people said "get rid of it," I chose to heed the advice. I don't think I have actually bought a piece of clothing that feels uncomfortable to wear, but on friend's advice I have bought out of my style comfort zone multiple times.

So, the question at hand is this: If the act is the same, does the helper's approach to it truly matter? Since I am on the receiving end of the act packaged with the approach, I cannot be completely objective. There is only one category of situation where I could care less about how aid is given. Last summer, I started across a street only to be grabbed by a man and pulled back. It was inelegant and without warning, but saved me from becoming road pizza. I will forego critiquing approach if it keeps me safe.

Now watch as the justification of my hypocrisy unfolds. Usually, approach matters to me for like most I prefer being treated respectfully. Among other things, this includes not being pushed into letting someone do what I am already doing, choices not being forced upon me, and my opinion not being dismissed as less worthy of consideration. I don't think the fact that I need the aid means I must take the help however it is given. Perhaps family dynamics play a role in making me feel less comfortable with their approach. Possibly I am ungrateful. Certainly I am defying the expression "beggars can't be choosers." Whatever the case, unlike Machiavelli, I do not think the ends justifies the means, unless it is a situation of avoiding bodily harm. Then "save me" always supersedes "respect me."

I believe this makes me a hypocrite. After all, my family is simply trying to help and what I see as lacking in respect is not meant that way. Shouldn't I take needed help and put my pride and ego aside? Don't their good intentions count for anything? Shouldn't I appreciate more and judge less?

The reality is that I can live with the hypocrisy far better than I can live with approaches that don't feel respectful. At its route, this is my choice and I own it though not exactly pridefully. If I could wave a magic wand and always be helped in ways that I like, my hypocrisy would vanish. Then again, if I had that magic wand I'd just wave it and the thing needing help would be accomplished in a puff of smoke.