Tag Archives: What Others Say/Do/Think

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.

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?

Don’t Watch!

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There are times when I stand on the sidewalk, Camille Guide Dog Extraordinaire at my side, trying to figure out some navigational complication. Often I’m simply trying to “hear” what’s going on. Passers by may stop and ask or offer assistance — an appreciated gesture that I sometimes accept gratefully. Unfortunately, a response from me of “No thanks. I’m good,” can result in problems.

People step back and *watch*.

I know this because when I get past the challenge, they might comment, my ears may pick up a slight sound or I can feel the weight of their eyes upon me.

So, there I am, trying to sort out a mobility issue, while somebody hovers. It’s creepy. It’s annoying. It’s rude. And, if I were sighted, it wouldn’t be happening.

Most significantly, it shows a profound disrespect for my own judgment for if I’ve said I can take care of it, standing to watch implies at least a suspicion I am wrong. Well, either that or some over-the-top fascination with how I function as if I’m an exhibit at the zoo. (I am not an animal in the monkey house. Promise.)

There is one crucial fact that might escape the average non-disabled person. Taking time to listen to my surroundings allows me to deal with situations as I study them with my ears. I may be working through a set of circumstances that challenge my skills and if people always save my butt, I will never learn how. Saying “No thanks,” can be me granting myself a learning opportunity. Those are good for me, right?

I suspect people’s motivation to stand and observe usually comes from a good place. They don’t want me to get hurt. While I value the goal of keeping me in one piece, I still cannot stomach it when someone lingers. It’s yucky. And did I mention creepy?

So, I am declaring anyone who walks away when I say, “No thanks,” off the hook if I turn out to be wrong and break a body part. Absolution is yours.

But I know this won’t be enough. Here’s a way to handle it that helps the non-disabled person feel good about leaving whilst demonstrating respect for me.

Tell me your concern while acknowledging your ignorance and taking responsibility for the discomfort you feel with moving on. “I don’t know much about how blind people navigate. I don’t know how you would handle x situation which is making me unreasonably concerned.”

Make it your fault – because it basically is – and see what happens. Since nobody has ever done this to me, I can’t guarantee the response. I can say that it would feel better than the hovering. Much better.

I encourage you to go forth and try it, then come back and leave a comment. I need data.