Tag Archives: anger and frustration

Election 2016

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Rarely if ever have I posted something overtly political, but this is too long and complicated for Facebook and I believe it needs to be said.

Millions of us are shocked and heart-broken over the results of the U.S. presidential election. The sentiment expressed by many is that hate triumphed over good and misogyny, racism and bigotry ruled the day. Characterizations of the winning side have been harsh, angry and negative.

Guess what? Those who support Trump would use equally negative, hateful words to describe us. They believe we are a bunch of selfish, godless deviants determined to destroy this country. When our negativity comes up against theirs, what happens is a deepening of the divide that exists in the social fabric of our country.

Michelle Obama said, “When they go low, we go high.” It is time for all of us to pick our words carefully, to use language that is not laden with judgment and loathing, and to try and find our common ground.

People worry about what Trump winning teaches our children and I think that’s a valid concern. What does our reaction to his victory teach them?

The question repeated over and over is this: How did we not see this coming? Blaming it on pundits and pollsters, politicos and journalists misses the larger lesson that will be hard for us to swallow. We weren’t listening. A large segment of American society was trying to tell us something about what it means to be them, to articulate an experience foreign to our own. Not only did we not hear them, but we often silenced them.  Instead of practicing tolerance, instead of trying to understand, instead of meeting them on their own territory, we blocked them out, shot them down and shut them up.

When you are fighting with your sibling, friend or spouse and neither of you are listening to each other, what happens? The conflict doesn’t get resolved, people’s feelings get hurt and everyone suffers.

We lost. A silenced group of people came out, exercised their right to choose our country’s destiny and finally they were heard. We can either respond with the same old loaded language that got us here in the first place or we can realize we missed something incredibly important and significant and start to figure out what it is and what common ground we can share.

Yes, they might believe things that are misogynistic, racist and bigoted. They may want to purge the country of anyone who isn’t white, able-bodied and Christian. Their beliefs scare me spitless. Increases in suicides, violence against marginalized group members and prevalence of hate-based graffiti leave me cold down to the marrow of my bones. Tolerance, though, is not about how we treat those who agree with us. It’s about how we treat those who do not agree with us, who believe things that make us sick. Fight policies that engender racism, misogyny and bigotry. Demonstrate basic respect for those who believe these things to be right. I think the expression is, “Hate the sin, not the sinner.”

Mourn our loss. Cry, scream and be devastated. Hug your friends, find community and find your strength. Then, take a moment to consider how you would want the “other side” to behave if Secretary Clinton had won and do that. Not what you think they would have done. What you would have wanted them to do. “Go high.”

I found this article to do a great job of offering context and articulating a path forward. Knowing the pop culture references is not necessary to understand the author’s points.

http://www.stonekettle.com/2016/11/bug-hunt.html

Events Previously Known As Legend

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Every once in a while, a sequence of events unfolds that I previously thought only happened to someone else. And I had never in fact met that someone else. They were events found solely in rumors and I had more than a passing suspicion they were urban legends.

Well, the other day, I went out to the bus stop and sat next to a woman. We exchanged small talk before I zoned out. When I came back to reality, some man was standing before me offering me something. I’d missed the naming of the something.

“Hold out your hand,” he demanded.

“For what?” I asked.

“A dollar for you to take the bus,” he explained.

“No, that’s okay. I have a bus pass, so I’m good.,” I replied.

The man went over and sat on the opposite side of the woman on the bench, and then said, “When God gives you a blessing, it may not seem like a blessing, but you should take it anyway because blessings come in unexpected ways.”

“Uh, okay.” I said.

The woman on the bench is moved to get involved. Turning to me, she said, “I think you hurt his feelings.”

I did a flabbergasted open and closed mouth thing and ignored them.

You can’t make this stuff up because nobody would believe you if you did.

PTSD. Again.

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In mid November 2013, I stopped writing in this blog. I had another traumatizing experience during a medical procedure and was unable to function normally let alone write anything that touched upon emotions. Coming back to this blog was prompted by a need to learn how to use WordPress on my iPad for the Braille Institute class. Then Braille Institute decided to establish a name badge policy and outrage worked as an awesome motivator.

Now it is time to write about what happened. As you read my recollections, please keep in mind that trauma is often stored in our brains not as narrative memory but as snapshots leading to disjointed recall.

I woke up from a trachea stretch with a tube keeping me from speaking and unable to move properly. There was a lot of chaos around me with people saying thins like, “Jen, squeeze my hand.” Nobody said things like, “Jen, I’m <insert name> and I’m going to do this.” Nobody appeared to be focused on keeping me informed of events or trying to establish a line of communication.

The tube came out quickly. The inability to move properly resolved itself. The damage was already done in the moment when I came to consciousness and couldn’t move, speak or understand what was happening, isolated in a scene of chaos. More trauma came as I learned that the situation might have been avoidable if better choices had been made by some of the clinicians involved.

Upon arriving home, I knew I would have some sort of reaction to my experience, but I wasn’t quite sure what. It took about twenty-four hours before the first signs became obvious. I walked across my kitchen and set the toaster oven tray in the sink. Then I crumpled to the ground in a ball and sobbed. There was literally absolutely no immediate cause for the tears. They just happened.

The uncontrollable sobbing became my life with tears unpredictably surfacing one to three times a day. I could be reading a book or chatting on the phone or sitting in a meeting and tears happened sort of like a sneeze – there are things you know will cause it, ways to possibly delay it, but sooner or later, it bursts forth.

Eventually I learned those delaying tactics, making being out in public somewhat more possible. Sometimes I was even able to identify what caused the tears and what emotions I was feeling. Once in a while it was even related to immediate events and not past trauma.

There is something unique about re-traumatization – having experienced trauma, developed PTSD and been successfully treated only to endure a situation similar enough to be the equivalent. then you are coping with PTSD from the recent trauma along with PTSD from your history of similar trauma. In some ways it is like light reflected between a multitude of mirrors so that the intensity of light is greater than any component part. It’s wildly exponential math. It’s emotion magnified, refracted, blenderized and placed in a pressure cooker with a faulty valve.

My entire life ground to a screeching halt. I gave up any notion of doing anything more than going to therapy, walking the dog and making sure we both ate and slept. I did things requiring use of my hands – sewing, baking, knitting – to fill my mind with something because it left less space for trauma. I didn’t visit my family for the holidays. I only talked to people who didn’t make me more upset. I kept asking for topics of conversation to be dropped before I lost it. Again.

Time passed and I was able to control enough of what was happening to begin tentatively living. Then, I knew another trachea stretch was on the immediate horizon because that’s how my stenosis works.

Part of my PTSD symptomology is that I cave in front of anyone I see as an authority figure or more of an expert in a field. Talking to doctors was harder than… crossing an eight-lane highway without a cane, dog or even audible traffic signals. I did it badly. I somehow got through it.

This time, the procedure went smoothly. With a positive experience the most recent in my memory, my life has settled down. I have been able to resume my regularly scheduled existence, just with way more therapy and a conscious commitment to real down time.

Here’s the interesting part. I’m being put back together in better shape than I was before November 15, 2013. I’m not doing it consciously, but I see things happening inside myself that I know will lead to a stronger me. I’m still having trouble wrapping my head around that.

 

What He Said

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I could not have put this better myself if I tried for a week.

http://www.planet-of-the-blind.com/2014/03/the-able-bodied-blues.html

Beyond Anger’s Reputation

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Anger has a bad reputation. It is associated with such negative emotions as hate, jealousy, ridicule and disgust. It has been linked to outbursts of shouting, abuse, violence, rape and destruction. Anger is associated with ulcers, high blood pressure, and heart attack. It has no redemptive value whatsoever.

I’ve been struggling with this assumption of anger as a negative emotion. While it can lead to less healthy and helpful feelings, is getting angry entirely bad? Anger might sometimes lead to bad behavior, but is that always the case?

When TABs do something ridiculous, I feel angry. Talking about the event later, even when I use humor, my anger is apparent to many. Based on anger’s bad reputation, my response to suboptimal TAB behavior has been called into question. “Jen, you are so angry. Why is that? It can’t be good.”

Oh, really? Can’t it?

I live in a world where my value is underestimated and who I am as a person completely misconstrued on a routine basis. I am subjected to a lot of actions I dislike. Furthermore, my life is shaped by these attitudes and assumptions. (If nobody sees me as datable, then bottom line is lack of sex. I’m pissed about that.)

There is an awesome quote by Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” In other words, getting angry at a world that sees disability as ours does is not a bad thing. Getting angry at sexism, racism or homophobia is not a negative state. It is healthy to perceive societal sickness and have a negative response to it.

What is not alright is to be eaten up by the anger so that you become an angry person. It is equally undesirable for the anger to lead to health problems. Finally, if anger fuels bad behavior, it is not a good outcome. The question then becomes whether or not the anger is healthful or harmful.

My anger about society’s attitudes and behavior surrounding disability feels like a clear, cleansing presence. A person does something ignorant and on my good days, I become filled with a bright light. It burns away all the potential negative beliefs I’d otherwise internalize.

To me, the “bad” response to TAB ignorance is to think the world is right. That leaves me feeling worthless, small and useless. It feeds depression, low self-esteem and a sense of pointlessness because if they are right that I am less, what is the point of life? Sucking up resources when you give nothing positive back in return seems wrong to me.

Anger, though, clears out the emotional dark. Moreover, it fuels my desire to change the world. Anger is what makes me educate those I encounter with suboptimal beliefs. Anger keeps me trying even when it’s the fourth time in twenty-four hours that I’ve been treated like I’m three. Anger keeps me writing and talking and explaining and trying to change the world.

My passion –the thing I want to achieve above all other things in my life – is altering how society views disability. Anger keeps me trying to do this. It is motivation and feeds my hope that change will come. It doesn’t weigh me down. It lifts me up.

I can understand viewing anger negatively when the impact on the individual is harmful. How, though, is my anger doing me or the world around me harm?

A fire can burn. A fire can be a warm, comforting presence. Who is to say anger isn’t the same?

Perspective

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At FabTherapists’s recommendation, I have joined group therapy. After two sessions, the jury is still out as to whether or not it will be beneficial. One goal is for me to intentionally work on how I interact with non-disabled people in an environment where I can get feedback. In other words, if another group member offered me help I didn’t need, I could actually question the person about the impact of my response and their initial motivation.

Last week, someone discussed how their job was making them unhappy and stressed. As they were leaving work ruminating on this, they walked past a vet who was a double amputee and “it put my stuff into perspective.”

I hate when people do this and had a rather intense response. It did not go well and the therapist said, “That pushed your buttons. Next week how about you come back and explain why.” I decided that a blog entry would be an excellent way to clarify my thinking.

My first objection is that life stressors should not be compared. Each of us is a unique individual possessing certain personality traits, backgrounds, coping abilities, resources and so forth. How we each deal with life stressors should be viewed separately in the context of who and what we are. Invalidating your own life stressors based on your perception of others’ circumstances being worse minimizes and invalidates what might be a truly distressing situation for you. It’s not fair to do that to yourself.

My second objection has to do with the way disability is being viewed. To make a comparison, an impression of what the disabled person’s life must be like has to be formed. What is that impression based upon?

All the societal beliefs about disability that we are taught come into play to create a picture of what that person’s life must be like. Often, such knowledge is based on inaccurate information, distorted images portrayed by the media, stereotypes and misconceptions. It eventually boils down to seeing the life of the person with a disability as being les happy, more burdened, less rewarding and more stressful. The person with a disability is suddenly relegated to a place of less, lacking and unhopeful.

When I have questioned those who view my life as “hard,” I hear about how it must be awful not to be able to see x, y and z, how I can’t enjoy a, b, or c, and how I won’t ever be able to do j, k or l. I *never* hear about how my life must be hard because I live in a world that sees me as less, has distorted ideas about blindness, treats me as a child and refuses to perceive my value. Which do you think is actually what I would label the “hard” part of my life?

And that’s the reason why what my fellow group member said bothered me to such a degree. They just diminished the double amputee vet to a “hard” life based on physical limits. He wasn’t a father, brother, or lover. He was someone whose life must be so stressful that it makes one grateful for the paltry stress they have. Personhood was stripped away. Value was ignored.

It isn’t that much of a leap to go from “They just reduced that man to nothing” to “Do they see me as nothing?” I struggle every day to find ways to be valued for who I am, to be connected by love and affection to other people and to live my life authentically. The last thing I want is for my life to be reduced to someone’s means to feel better about their own existence. *I* just got lost in that equation and used in the process.

To answer my group therapist’s inevitable question, “How does that make you feel?”

Devalued. Invisible. Used. Angry. Frustrated. Resigned. Tired. Hopeless. Sad.

Worthless. Scared.

The Ultimate Excuse

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At a symposium on disability, I attended a wide array of workshops, but the same theme kept repeating. “They don’t know what to do,” was related to how TABs deal with invisible disabilities, approach our sexuality, deal with us in public, offer or avoid giving aid and the list goes on. About half way through the day, it struck me — not knowing what to do has become an all-purpose excuse with incredible power that simultaneously liberates TABs and imprisons people with disabilities.

If I describe to a friend an annoying encounter with a non-disabled person, I am invariably told, “They didn’t know what to do.” This explanation is proffered as the conclusion to the conversation, seen as explaining everything and making further discussion unnecessary.

Any emotional upset on my part should be assuaged by this rationalization. Blaming the non-disabled person becomes impossible for holding someone responsible who didn’t know better is perceived as mean-spirited. Further conversation is made irrelevant for the explanation is known. Everything vanishes with six little words.

Each time this happens, I feel as if I began a journey that ended five seconds later. It is a foreshortening of what should be a conversation or at least a chance for emotions to be vented. Though this happens frequently, each time I still feel caught between my unresolved feelings and social pressure to accept the excuse. The end result is the minimizing, silencing and dismissal of my experience and feelings.

When a TAB uses the axiom “I don’t know what to do,” I find it even more infuriating. Admission of a lack of knowledge, in and of itself, is not a bad thing. What this confession of ignorance is allowed to achieve is problematic. Feelings of discomfort or fear can be dismissed, any associated guilt is alleviated and need for further action eliminated. This potent combination allows the non-disabled person to go merrily on their way.

From my knowledge of disability issues, I have learned that TABs often feel uncomfortable when they are presented with the possibility of interacting with a disabled person. This unease can come from a multitude of sources – fear from having to think about potentially becoming disabled, concern that they will become entangled in a situation where they need to do something unpleasant, not wanting to admit ignorance, discomfort with an unusual appearance and… You get the idea.  Instead of acknowledging or dealing with these thoughts and emotions, the person waves the magic want, “I don’t know what to do,” and – poof – all of that unpleasantness vanishes.

There may still be residual guilt or a sense of obligation. “Someone really should be helping that person.” The thought continues, “But I don’t know what to do.” Obligation, guilt and responsibility disappear.

I have no idea why not knowing what to do has become an acceptable justification for needing to do nothing, but it has. I’m not certain if this is unique to issues related to non-disabled people confronted with disabled folks, but it is definitely true in this case. Finding out what to do is not contemplated as a potential course of action. “I don’t know” becomes “I don’t have to.”

What I find intriguing is that “So ask” never comes into play. My suspicion is that this is because people with disabilities are not seen as the ultimate experts on their own needs nor are they considered people capable of communicating. We are seen as our disability and that fact is all consuming of TAB awareness.

Thus, “I/They don’t know what to do,” functions as an ending. No more discussion is needed. No action should be taken. Until that changes and “I/They don’t know what to do” begins a journey to find the answer, a situation that could lead to better understanding is squandered.

Ironically, “I don’t know what to do” has no power when spoken by a person with a disability, except maybe to open the flood gate so suggestions as to how we can fix it drown us. If we don’t know, we have to fix it. If they don’t know, we have to live with it. Meanwhile, those who don’t know in the first place move forward unimpeded.

What does It Take?

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I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?