What Vulnerable Implies

I am in the mood to dissect the word “vulnerable” as it is used to describe groups of people. You’ve heard it a lot this election cycle: “The most vulnerable among us are at greatest risk if x, y and z policy are put into place.”

I’m not attacking the concept of vulnerability that Brene Brown has articulated so well. It is important to be willing to risk ourselves emotionally, especially if we want to find authentic connections with others. Vulnerability on an interpersonal level is great and I only wish I were better at it.

I’m talking about vulnerable, the adjective, meaning suseptible to being wounded or attacked. My issue isn’t even with the word itself, but its application when used to describe marginalized groups who are perceived to be able to be harmed because of their group membership.

I find it to be a very disempowering word. Moreover, I find it to be an inaccurate word. There are two general schools of thought about how disability is defined.  The first says that I am disabled because my body possesses a set of traits that make it impossible for me to do certain tasks, so I’m disabled. Another theory holds that those traits are only disabling because we live in a society with a specific structure that only provides for given tasks to be achieved in particular ways with a limited set of tools. The first theory says I’d be disabled no matter what environment I inhabit, tools I’m given or varied ways a goal can be achieved. The second says that I’m only disabled when I’m placed in a specific set of circumstances and that a different set would not make me disabled. The question turns into this: Am I disabled by something inherent within me or by the world I occupy? I would argue it is the world I occupy.

Back to vulnerable. The way the word is being used lately implies the susceptibility of the group is based on a trait of that group. Vulnerability is reliant upon the group definition. It strips away all societal structure, outside factors and cultural context. Children, seniors and people with disabilities are vulnerable because they possess certain traits putting them at risk. From this perspective, people within “vulnerable” groups are almost victims, without any remedy for their vulnerability.

I beg to differ. Our vulnerability comes from the world we inhabit. The laws, policies and practices of our society make us vulnerable. If we lived in a world where seniors were given enough money to live a reasonable life, including access to medical care, etc., sufficient to meet their needs, would they still be “vulnerable”? Similarly, if all children had access to the same high-quality education, sufficient food, clothing and shelter, safe places to live and parents equipped to nurture them, would children be “vulnerable”?

The way our world works makes certain groups susceptible to attack and harm, not the nature of the group itself. When people talk about the most vulnerable among us being at risk in a Trump administration, they are tacitly agreeing to a version of reality that assigns the cause of the vulnerability based on the characteristics of the group. People with disabilities are vulnerable because their bodies work in certain ways, not because they happen to inhabit a world functioning with a specific set of rules. It is like defining how a race can be won so narrowly that most of the competitors cannot actually win.

I have no idea how to solve this problem because I don’t currently have a word or phrase to replace vulnerable. The best I can do is “people made vulnerable by our society.” So, for now, one could say, “A Trump administration appears poised to inact policies that will place those our society has already made vulnerable more at risk.”

Election 2016

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

The You Cants

Any person with a disability is entirely too familiar with the phrase, “You can’t do that.” If the Obstinacy Gods smiled down upon you at the time of your birth, you are temperamentally pre-disposed to say, “Says you, not me.” Should the Obstinacy Gods not have been so benevolent, hopefully experience, parents or teachers instilled the same reflexive reaction in your soul.

For me, being explicitly told I couldn’t do something in my mid to late adolescents did cause the reflexive reaction described above and I often steamrolled ahead to prove the person wrong. Unfortunately, the “You Can’t”s are typically not explicit statements you can then disprove. Rather, they are insidious attitudes and lower expectations. Nobody says you can’t do something, they just don’t expect it from you which subtly changes the landscape in fact making it harder to accomplish the goal.

Long before a teenager learns to drive, they are exposed to all sorts of information about driving from simple observation to more tangible experiences like sitting on a parent’s lap behind the wheel. People talk about the person some day driving. “Your Barbie drives a Corvette. Do you want to drive one when you get older?” It is assumed the person will one day drive and, guess what, they typically do.

Now, take a child with significant learning disabilities. Somewhere along the way, the adults in this kid’s life have gotten the idea into their heads that the child will never drive. Suddenly, all that exposure and assumption and planning and passive education vanish. It is often done to protect the child from “unrealistic expectations,” but simultaneously strips away all the advantages everyone else gets simply through the typical course of living. Not only does the child with a disability have to learn how to drive, they also must do it without any support and lacking the tools other kids are given to accomplish the task. That’s….. nuts.

Nothing About Me Without Knowing Me

There’s a phrase – “Nothing about me without me” – that is used frequently in the disability rights movement. It is a means to combat the tendency in the “helping” professions to proclaim what is “best” for a person with a disability, while those making the choices are not disabled and have not found out the wishes of the disabled person. In other words, any decision about a person with a disability should, um, involve that person. It might seem very basic, but you would be surprised.

Parents of an adult with Down’s Syndrome speak with social service types about their child’s future, setting up such arrangements as what group home that adult will live in. Nobody asks the adult if they want to live with only members of the same gender or what neighborhood they might prefer. Legislators are writing new laws about how at-home assistance will work for people with disabilities, but there is not one disabled person involved in the process. My local public transit authority is making some drastic changes to routes, and while people with disabilities will be impacted by the alterations, they haven’t as of yet actually sought or even been open to the input of blind people.

The good news is that “Nothing about me without me” has made a lot of progress over the years.

With all this in mind, I was thinking about how people make judgments about me and my life without actually knowing me. They see blind person and think things like “Her life must be hard,” “She must not be able to enjoy TV,” or “She can’t possibly do X.” This, as you all know, drives me nuts.

When, through another’s words or actions, I encounter this directly, I can address the misconception the person has created. It would be even better if I could derail the process before it comes to that point.

Can the phrase “Nothing about me without knowing me” become popular? I want to know if just hearing that phrase makes sense to people.

Comic

One of my long-time readers sometimes comes across comics with a disability theme.  He then types up a description for me.  As soon as I read this one, I knew it had to immediately go  up here.  among other things, it is an awesome example of “You may think I’m drowning, but this is the way I swim.”

            The artist is Fábio Coala and I think more of his work can be found at

http://coala-io.deviantart.com/

            The actual comic is at

http://i.imgur.com/MY2Ys.jpg

                The description is as follows:

               In the first panel, a boy with brownish skin and spiky brown hair under a green ball cap is holding a large cardboard box with air holes.  He asks “What is it mom?”  From off panel a voice says: “Open it!”

               In the second panel, the box is open.  A yellow puppy is emerging.  It’s right front leg is missing.  From off panel the boy says “A puppy!”

               In the third panel the boy is holding the puppy looking dismayed.  He says: “Wait… What kind of a puppy doesn’t have a leg?!”  The puppy is gleefully wagging it’s tail.

               In the fourth panel the boy is storming off with a tear in his eye.  He shouts “What’s the point of a sick dog?  This sucks!  I don’t want no puppy.  I don’t want anything.  I hate you!”  The puppy looks at him confused.  There’s a pink ball next to it.

               In the fifth panel, the puppy looks at the ball and wags his tail.

               In the sixth panel, the puppy takes the ball in its mouth.

               In the seventh panel, the puppy is running with the ball in its mouth.

               In the eighth panel, the puppy falls over with a “pof!”.  The ball slips out.

               In the ninth panel, the puppy has retrieved the ball and is running again.

               In the tenth panel, the puppy approaches the boy who’s playing a video game.

               In the eleventh panel, the puppy is looking at the boy while holding the ball and wagging its tail.  The boy turns and says “You’re not like the other dogs…  You can’t play.  You’re only there for people to feel sorry for you.  Don’t pretend you’re happy.”

               In the twelfth panel, the boy takes the ball and says “Gimmie that.  Now catch… and get out of here.”  The puppy looks elated.

               In the thirteenth panel he throws the ball.

               In the fourteenth panel the puppy is running.

               In the fifteenth it falls over again with another “Pof”.

               In the sixteenth, the boy says sadly, tears in his eyes, “See, you’re not like the others.”

               In the seventeenth, the dog regains its footing.

               In the eighteenth, it lunges and latches onto the ball, happy again.

               In the nineteenth, the boy smiles, tears still in his eyes.

               In the twentieth, he wipes away a tear and smiling says “It’s no use, right?  You don’t care about your leg… You’re happy anyway…”

               In the twenty first, the puppy looks at its missing leg and raises an ear in confusion.

               In the twenty second, it returns to looking at the boy with absolute joy.

               In the twenty third, we finally see the boy’s full body.  His own right leg is amputated above the knee.  He walks on crutches saying “OK, let’s play outside.”  The puppy runs ahead of him barking.

Running With Scissors

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.

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.
Watch here.
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 culture of silence to protect them, but it didn’t work. Thank goodness it didn’t work.