Category Archives: The Why Of It

Here are explanations of disability from what a particular disability is to what someone might need to why they need it.

What Is Help?

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Here is some food for thought. Uncertain what street I am on, I will stop and ask someone. This is categorized as asking for help. Uncertain about what street they are on, a sighted person looks up and reads the street sign. We do not call this help.

A street sign does not magically appear suspended above our heads. It was ordered, made and hung there to aid people navigationally. However, if you can read it with your eyes, the effort behind and purpose for the sign’s presence is stripped away. You are functioning independently by reading information that is just there.

Why?

Disability I.Q. Math

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While I will argue with my last breath that the social isolation I experience is a factor of other’s attitudes and beliefs, I internally constantly re-examine this. Unfortunately, the world feeds this constant search for an explanation with my actions, words and shortcomings at its center.  (Are you giving in to your shyness?  Are you seeking people out?  Are you self-absorbed?  Are you no fun to be around?  Are you unclean?)  Seeking fault in myself is a habit that has reached the level of reflex.

It’s a bad habit that keeps me constantly doubting myself, allowing those around me to remain blameless.  It is an internal dialogue that tears me down and I can never really like myself because I am forever finding fault with myself.

This maladaptive tendency was highlighted recently.  First, I attended a group gathering with a friend, which was described in the previous two posts.  Then, I went off and spent time with a gaggle of bisexual people coming together for a wWite House event.  Typically, with group gatherings, I find myself hanging out with my dog as others chat and laugh.  There are those who make an effort, but it is an obvious effort as opposed to genuine desire to spend time with me.

This time, the proportions were all off.  The alone moments still occurred, but moments of connection and social inclusion were more numerous.  Guess what?  I had fun.  There was, gasp, social ease, which I quickly learned was a state I rarely have ever experienced.

Over the course of about 48 hours, the reason became clear.  The number of people in the group who knew about disability was higher than the usual.  I heard, more than once, “Oh, my blind friend ….”  I heard, “Yeah, so-and-so uses a wheelchair….”  There was even, “At the confrence we organize, we provide accommodations such as….”  It was a group of people with an average disability IQ far higher than anything I’ve encountered, unless I was with a group of people with disabilities.

So, maybe it is simply about how many people know how much.  Measure the disability IQ of the individuals constituting a group and it will predict my experience.  If that is in fact true, then it cannot be about me.  It is about  math.

Never Give In?

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In the midst of a novel, I stopped dead in my mental tracks when I read, “She had never given in to her disability.” “Given in”? As though disability were a foe or unstoppable force.

To declare that statement foreign to how I relate to my disabilities is a drastic understatement akin to declaring a drop of water the equivalent of the Pacific ocean. (How’s that for dramatic hyperbole? Hold on to your socks because there’s more.)

If the common understanding of disability is a “force” in “opposition” to me, then it makes complete sense that people think I’m amazing for walking out my front door. After all, I have made the Herculean effort to fight against something keeping me in place. No, actually, trying to push me in a different direction.

Our collective consciousness is full of entities in opposition — good versus evil, freedom versus dictatorial constraint, healthy versus infirm and even smile versus frown. No wonder we cannot escape Hollywood’s determination to continue to use disability as a metaphor for evil, a social understanding of disability as life-constraining, the notion that a physical condition is contagious and even that having a disability automatically categorizes you as unhappy. We are in opposition to our condition as good fights back evil, freedom overcomes totalitarian regimes, health is a goal we “achieve” and happy shines forth from sorrow.

What a load of manure. I’m no more fighting against my disabilities than you are struggling to keep your cells all together in the form of your body. You just are and disability just is. Fact, people. Fact.

Nothing About Me Without Knowing Me

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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.

What’s the Opposite of Pity?

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I’ve been reading about race relations in 1962 Atlanta, Georgia, and repeatedly hatred has been the focus.  In fact, when it comes to issues of diversity based on race, gender, gender identity, sexual orientation, ethnicity and religion, hatred is one of the dominant emotions.  (When the prejudice manifests itself in an act, we call it a “hate crime.”)  The way bigotry toward these marginalized groups is combated involves fostering states opposite to hatred, such as kindness, compassion and understanding.

On the other hand, hatred is not an emotion I associate with the prejudice I experience as a person with a disability.  Pity is the primary culprit and unlike hatred, it does not have opposites that come to mind which can be promoted within the hearts of people without disabilities.

To make sure we are all on the same page, let’s open a dictionary.  Pity is defined as “sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy.”  Among its synonyms are words like compassion and commiseration.  While perhaps not a pleasant emotional state, pity is not, unlike hatred, given the stamp of social sanction.  An act springing from pity is considered an act of mercy, making it very hard to quash.

Looking at the antonyms of pity, we discover three broad categories.  There are the good words, the bad words and the neutral ones.  Opposites to pity with a negative bent are cruelty, harshness, hatred, meanness, mercilessness, disfavor, malevolence, unkindness, and disdain.  Slightly more palatable are disinterest and detachment.  The positives are cheer, happiness, joy, advantage, blessing, and good fortune.

Think about this for a moment: To combat racism and sexism, we encourage states opposite to hatred.  In the case of disablism, to promote the opposite of pity would either involve fostering something like cruelty or hatred, working toward indifference, or trying to somehow convince people that disability is good fortune.  That is a lousy, impossible set of options.

It’s far clearer to say, “Don’t hate someone.  Feel compassion, kindness and love,” than to say, “Don’t pity someone.  Feel…”  What?  Indifference? Cruelty?  I suppose “joy” isn’t a bad idea, except I can’t conceive of how you get a nondisabled person to go from viewing disability as negative to not simply tolerable but joyful?!

Dissecting all these linguistics has given me some new insight into why disablism is so intractable.  In a world where pity is a virtue, how do you eliminate it?  When its opposites range from the good to the bad, what ultimately becomes your goal?  When even the positive states are going to be impossible to sell, in the end what do you have left?

Someone suggested to me that the opposite of pity is confidence.  “I don’t pity you.  I believe in you.”  Faith in my ability as a person with a disability to do what needs to be done is definitely more of a place to start than I had before the suggestion was made.  I’m still not certain, though,  how you get people from the condoned “You poor thing” to the place where they view disability as something other than tragedy.

The Ring Theory

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A while back, I came across a piece by Susan Silk and Barry Goldman that talks about how to behave in relation to another’s trauma. 

http://touch.latimes.com/#section/-1/article/p2p-75241622/

 

Think about personal trauma like this: You drop a rock into a lake and that stone is the ordeal landing on the head of the person experiencing it.  The ripples move outward, water closer to the impact point rippling more significantly than water a foot away. 

 

Now apply this to personal trauma.  The closer to ground zero, the more a person is affected by the trauma.  A significant other would be close to the center whereas a next door neighbor would be further away.  In this way, you can gauge the degree to which any given situation is impacting others and place yourself within that structure. 

 

The rule is to not complain or otherwise vent your feelings about the situation on anyone closer to the trauma than you.  Instead, dump your feelings about the situation on someone even less affected than you.  To those closer to the center, give love and comfort and support. 

 

And the person in the center whose trauma it is? They get to do and say and feel and be whatever they want.  That is the benefit of being at Ground zero – nobody complains to you, gives advice, judges your behavior or otherwise sends negativity inward toward you. 

 

Obviously there are limits to this, like how long the person experiencing trauma is at the focal point.  Life moves on, people adjust and eventually things shift.  If your beloved cat dies of old age, you probably aren’t at the center of things as long as you might be if your beloved cat was hit by a car at age five.  Degree of trauma matters in terms of duration of the complain/support rule. 

 

Having been at Ground zero more than once in the past few years, I can say with absolute certainty that people who respond to me with negativity or their own fears and reactions to my situation are not helpful.  In fact, it often causes me to shut down and relegate that individual to a more distant sphere of my life.  Make me cope with your feelings about my predicament? Go away.  Decide you know better about my situation than me? It’s time for a friendship vacation.

 

Silk and Goldman do not touch upon one aspect of the situational dynamics.  When those you would count on for support instead offer negativity and judgment, you are in a complicated place involving rocks and hard things.  If you push the person away, then you lose any hope of gaining support in the future.  If you tolerate the suboptimal behavior, then you open yourself to more of the same.  At a time when what you need is propping up with love and comfort, you are not only getting something far less helpful, but you must also figure out how to handle it.  Coping resources already stretched to the breaking point by the trauma have to now also withstand interpersonal drama. 

 

Ground zero needs to be about the trauma not drama.  Offer love, support, foot rubs and pot roast.  Refrain from offering up yet more for the person with the trauma to handle.  Make it your unspoken gift to them.

 

Misconceiving

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Transgender(ed) people have an expression used to describe the way another person looks at them, sees certain identifiers they link to a particular gender and then assigns them that gender.  Misreading. 

 

An androgynous person with a prominent Adam’s apple is read as male.  If they instead had long nails and heavy eye makeup, they would probably be read as female.  In our heads, we all have traits we consider “male” and traits we consider “female.”  Based on their presence or absence, we assign gender.  a collection of traits goes into someone’s head and out pops a gender label.

 

This drives some trans people nuts.  So what if you can see their Adam’s apple?  If they call themselves female, then they are female.  Period. 

 

People with disabilities are misread in an entirely different way.    For us, it starts with a single entity – white cane, dog guide, wheelchair, prosthetic, support cane, hearing aid, use of ASL or informational disclosed – that identifies us as disabled.  From there, we are assigned traits and entire lives are created for us in the mind of another.  We are a word that leads to an entire story.

 

Maybe the word “misreading,” already claimed by another group to mean something specific, is the wrong term to use.  Maybe it should be “misconceiving,” which has the element of *creating* in its crafting. 

 

To the stranger who has decided they know what my life must be like, I can say, “You are misconceiving me.”  They might not know what I mean, but the explanation “You see my disability and then create this concept of what you think my life must be like which is inaccurate,” is far easier to give than debunking each false belief, one after the other. 

 

A broad term to convey a cognitive tendency.  Works for me.

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.

Riding The Bus With My Dog

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Ever wonder why bus drivers need to announce *every* stop? Here’s a great example.

To conserve energy so I could attend a yoga class, I decided to take a bus one way to the vet’s office. As usual, while swiping my bus card I told the driver my destination. After sitting down, I pulled out my phone to monitor the street numbers as they passed. My first mistake was in putting the phone away just before my destination.

The driver did announce all the stops, which had me convinced she would also indicate the one I needed, even if she forgot I wanted it. That was my second mistake.

She didn’t announce my stop nor did she stop. When she announced the stop after mine, I called to her, “I wanted 39th?” I think her response was simply saying she’d gone past.

When I got off, I inquired, “How many streets back is the stop I wanted?”

“You should cross the street and take the other bus back,” she replied.

“Don’t have time. Do you know how many?”

“Two or three maybe. Sorry,” was her answer, with the apology covering either her lack of knowing or her mistake or both.

Armed with this wealth of information, Camille and I began walking. About the time I reached the second intersection, it dawned upon me that I would need to cross either on or off ramps for a highway. Having never done that in my entire life, I was a bit…. concerned. With a crosswalk and light, it was probably one of the safer ways to cross an off ramp, but without an audible signal, it was still daunting. I spent a long time listening to the traffic pattern trying to figure out how you timed things.

I have to say that my little black dog was awesome. I might have been flipping out, but she was a total pro.

And then we had to do it again on the other side of the overpass.

Bus drivers are suppose to announce *all* stops whether they pull up to take on or disgorge passengers precisely so that blind people can get off where they wish. This driver’s mistake put me in a pretty unhappy situation only mitigated by the fact that my dog is good at her job.