Category Archives: The Messy Side

This is where all the warts, scars, self-indulgent introspection and ugly emotions live.

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

Learn to Laugh

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Freud categorized certain common coping strategies as “defense mechanisms.”  Most people are familiar with at least a few of them – repression, denial, regression and rationalization. Later, scholars broke them down into hierarchical categorizations.

Believe it or not, humor, where an uncomfortable or unpleasant internal reaction is transformed into a more enjoyable emotion, is considered one of the “higher-order” defense mechanisms.

Since high school, I’ve known my tendency to seek the humor in the things that happen to me was a way of coping with the inherent discomfort.  A couple of weks ago, a line from a song reminded me of this:

 

It’s only funny ‘cause I learned to laugh.

 

How many of us, with what degree of frequency, teach ourselves to laugh instead of cry? Another musician’s words come to mind:

 

You have to laugh at yourself, because you’d cry your eyes out if you didn’t.

 

I worry about how people with disabilities handle the ongoing, daily discrimination and oppression they face. I’ve watched many people become increasingly bitter and then be rejected more because of that bitterness.  I’ve noticed others become comedians, poking fun at themsellves before another can do it.  (This is often hard to discern from those who use humor as a means to dispel others’ discomfort.)  Sometimes the humor turns dark, as if the bitter and the funny were shaken well, then poured.  As I think back, I know my own use of comedy has evolved, from protective to bitter to something cleansing.

No matter how we have each learned to cope, our coping sprang from a need to handle constant emotional assaults from the outside world.  Yet, our world praises the disabled comedian and shuns the bitter one.

I’m not going to suddenly give up my tendency to find the funny, but I am beginning to wonder if bitterness is, in fact, a more honest reaction.  How people with disabilities are treated is painful.  Transforming that hurt into humor is far more enjoyable for everyone involved, but is it as honest as bitter?

 

The following was posted as my contribution to  Blogging Against Disablism Day 2016 

An Inconvenient Truth

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  • Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.

 

This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

fhttp://tinyurl.com/BADday201Blogging Against Disablism Day 2014

Who?

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Pop quiz time everyone. Sharpen those pencils – or maybe in this day and age it’s create a new note on your phone – and get ready to answer a few simple questions.
1. If you needed a ride home from the emergency room, who would you call?
2. You need to move a piece of furniture that’s too heavy for you alone. Who can you ask?
3. It’s Thanksgiving and you aren’t cooking for anyone. Who will include you in their celebration?
4. You are sick with the MartianDeathFlu. Who will offer to come over and make you something to eat?
5. Who will go out of their way to come give you a hug on a bad day?
Now, on your list, please remove anyone in your family or that you are dating. Take off coworkers as well. Who does that leave you with?
One of the consistent problems plaguing my life is a lack of someone to help and support me. Whether the pragmatic or the more intangible of emotional support, I seem to routinely have no answers to the above questions.
For example, last time I needed to move my couch, I had to open the sofa bed up, pull out the mattress, put the frame back together, move the couch and then reassemble everything. Yes, it worked. No, it wasn’t any fun at all. I suspect the dog was plotting how to have me assessed for insanity.
Why, though, did I ask you to remove family, significant others and coworkers from your answers?
Many people with disabilities have complicated, difficult relationships with their families and are not close in the way necessary to receive ongoing support. While they might need the love and support relatives can give, the mere fact of dependency frames the entire situation in parent-child terms for that is the model we all know – the person needing care is the child and the person offering is the parent. Even when it comes to elderly family members, the relationship between those individuals and their children is often discussed in terms of the parent “becoming” the child. We don’t have a language or paradigm that allows for needing another family member in an ongoing, dependency based way that does not reflect an adult child relationship. and who wants to be a grown up having to accept the limitations of childhood in order to get their needs met?
People with disabilities are often more socially isolated than their TAB counterparts, find dating to be more challenging and more frequently are single as opposed to part of a romantic relationship. This means we are less likely to have significant others or spouses to lend a helping hand.
With the unemployment rate of people with disabilities at something between 60 and 75%, coworkers are often not a part of our personal landscape either.
This leaves us with our friends to turn to in times of need. In our twenties and early thirties, when many people live more care-free lives, reliance upon friends works great. They need you. You need them. Everyone gets their needs met. It’s not perfect, but things tend to work out most of the time.
Then TABs begin to pair off, acquire mortgages and kids and car payments and friends become the parents of your kid’s friends, people you share a meal or glass of wine with and those you keep tabs on via Facebook. Meanwhile people with disabilities have often not shifted to these life “milestones” and still need the friendships that sustained us in our twenties. We haven’t been able to replace those relationships with others and this creates a big void that often becomes evident logistically yet probably impacts the individual most on an emotional level. After all, you can go through an insane process to move your ridiculously heavy couch, but who will come give you that hug?

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.

Confession

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…It’s good for the soul, right?

Recently every time I turned around, there seemed to be a person with a cognitive disability. Whether passing on a sidewalk, riding on the same bus or the person helping me in the store, there they were. Everywhere. Over and over.

I am noticeably uncomfortable around people with cognitive disabilities. I never know what to say, do or think. Though not my finest trait, is my own discomfort a parallel experience able to teach me something about TABs?

A useful distinction can be made between my feelings and actions. My unease comes from a complete inability to figure out the person in question. I have absolutely no way of knowing the nature of their disability let alone their functional limitations. This means I don’t know if I should use simple language, speak slowly, ask questions to confirm understanding, repeat myself, or….. You get the idea. I don’t know how to relate and that feeling leads to my get-me-out-of-here impulse.

And, okay, I also have internalized a belief about people with cognitive disabilities behaving unpredictably. It’s not that I would be hurt out of malice or intent. Rather, they might do something that would be fine if I could see but disastrous since I cannot. That increases my unease.

And my actions? I take a deep breath, set my feelings aside and treat the person LIKE what they are — A PERSON. My only unusual behaviors involve word choice and meaningful eye contact. (Believe it or not, you can do meaningful eye contact without working eyes. I can’t explain how, but I’ve recently realized I can instinctively do it.) While I probably don’t manage to entirely hide my feelings, I do my best to minimize them.

Why? I know my reactions are based on stereotypes, misconceptions and ignorance. That is really the only thing distinguishing me from a non-disabled person who behaves sub-optimally around me. I recognize my feelings are not fair, reasonable or appropriate and take steps to remove them from my decision-making about behavior.

I think my point bears repeating in a slightly different way. How you feel does not need to be how you act.

My own vast experience around issues of disability makes it possible for me to understand my own internal reactions. Because most non-disabled people lack such a background, they don’t have a framework to guide them. Can they be given one?

While the bottom line about changing non-disabled people’s attitudes and actions around disability comes down to education and exposure, perhaps the message needs to be different. If my primary motivation starts with a desire to treat the person before me like a person, then maybe non-disabled people need to first be made to recognize our shared humanity. That lesson must simultaneously come with the message that they probably possess little to no accurate information about disability.

Unfortunately, when people feel ignorant, they tend to avoid the situation. I’m not sure how to convey shared humanity, ignorance and a necessity to not run away all at once.

Magic Words

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About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant — seemed to increase my social connections or generate more emotional intimacy in my life.

Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He’s made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I’m disabled, he not only believes me but understands why it happens. That’s valuable in a way words cannot express.

We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from “Blind, incapable, weird looking person” to “Smart, funny, intelligent woman.” His argument is that people meet someone like me and suddenly don’t know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am.

I believe words have power. They don’t have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don’t take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process.

Okay, there is something that has the power to derail things – shock. It’s why some women with disabilities dress provocatively — to shock potential dates out of the “not sexual” mindset.

What would I need to do in order to shock people? Would that be in line with my personality?

“Yes, I’m blind. Be careful. You don’t want that to cause you to underestimate me. That would be a bad idea.” The last sentence would be delivered with a slow smile. Not even sure I’m capable of a slow smile on purpose let alone uttering those words.

If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It’s not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it.

Besides, if I noticeably aid people in coping with their discomfort, I’ve set a precedent. “You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too.” Do I want to establish such a pattern?

Yet, inaction will not change anything. Principles are great, but they don’t make you feel loved and valued.

Besides, women have needs. And hormones. and needs that go beyond hormones.

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.

Running With Scissors

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When I throw my yoga bag over my shoulder, my guide dog, Camille, runs over and assumes harness position. Knowing we are headed to a place of endless pets and belly rubs, her tail wags with greater than average enthusiasm. We call this a learned behavior, concluding Camille is smart for predicting what will happen.

A child carefully walks across their kindergarten classroom carrying a pair of scissors in the prescribed way. They have learned – probably because numerous adults have repeatedly scolded, coached and cajoled – that it is unsafe to run with scissors or to hold them the wrong way. We also consider this admirable behavior.

I walk into my local grocery store betting myself how long it will take to find someone to assist me. Through experience, I have learned that help will not materialize quickly or easily.

When a child learns safety procedures or a dog begins to accurately predict a routine, we call that good. When I anticipate an activity usually difficult will probably again be hard, I am making assumptions, thinking negatively and not giving people a chance.

Is there truly a difference between the three things?

When adult humans take the totality of their experience and apply it to a new similar event to forecast what will happen, we call it optimism if the predictions are good, and carrying around baggage when they are negative. If the prophecies are routinely downbeat, we are further labeled pessimists. Because we are creatures capable of reason, we try to overcome our negativity – to set down the baggage or remember that a familiar situation might turn out differently. In other words, set aside the statistically significant in favor of believing things will be better this time around. (This more positive attitude has been proven over and over to be healthier for us on a multitude of psychological and physical levels.)

At Rolling Around In My Head, Dave Hingsburger wrote an entry about <a href=”http://davehingsburger.blogspot.com/2013/03/were-off-to-see-wizard-heart-brain.html”>his own personal baggage.</a> He articulates the fine line between the benefit of predicting based on past events and the ways baggage can interfere with our experience of a situation. To summarize, just because 95% of the time a situation unfolds in a specific way it does not mean you aren’t currently in the 5% of the time version. Behaving like it is the 95% of the time event when it is the 5% occurrence is suboptimal.

I began thinking about how the copious amounts of baggage people with disabilities carry is often used against us becoming a tool to minimize, silence and dismiss.

People with disabilities acquire their baggage by living. One morning, I did not impetuously decide knitting in public would elicit excessive praise. Instead, it happened repeatedly, creating my voluminous luggage over time as I interacted with the world. Based on that, I might leave the knitting at home to avoid unwanted attention. Suddenly, I’m judged to be carrying unreasonable and unnecessary baggage, impacting my decisions negatively. (To be clear, even I think leaving the knitting at home is absurd, but not because of the reasons given. I think letting other’s ignorance limit my actions is just that…. limiting.)

This baggage can in fact provide a benefit in the form of lessons about how to approach a situation. Last time I asked a bus driver to drop me off at a particular stop and didn’t pay close attention, problems developed. That part of my baggage helps me remember to remind drivers, even if I might be perceived as annoying. The label “nice” is not worth it if I end up in an unsafe situation.

Sharing this acquired knowledge with others often backfires. I’m not seen as learning through experience and being prudent; I am perceived as holding one person responsible for another’s actions. “How do you know this driver will forget about your stop?” In fact, I don’t know. I just know that if they do forget, it will suck to be me.

I do agree with Dave that determining if you are in the 95% situation or the 5% one and not treating one like the other is key. Therefore, if a driver is announcing each and every stop, I don’t offer any reminders of my request.

The thing that bothers me the most, and the thing I cannot prove through logic or reason, is the fact that my same actions done by a non-disabled person would be perceived differently. I have baggage. They’re being smart.

Leveling such value judgments at the same behavior done by different people is the first step in employing social control. It isn’t far from “Why are you behaving in such a negative manner?” to “Nobody likes a negative person,” to “Your bad attitude is why nobody will be friends with you.”

Do I sometimes behave badly? Of course. Is it sometimes because I used my experience as a person with a disability (baggage) and judge things badly? Definitely. How does this make me any different from a person without a disability who uses their experience gained over time? It doesn’t. Why, then, is mine baggage and theirs learning? I’m just running with scissors, cutting myself and using more care the next time around.