Tag Archives: ignorance

Public Property

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Pregnant women often speak about total strangers asking to touch their bellies.  The social mores that keep people from requesting contact with the body of someone they do not know suddenly vanish in the face of that rounded mound of baby.  Even worse, a significant number of people don’t even request permission before giving a rub.  I cannot come up with another situation, except maybe when it comes to “directing” a blind person, in which respect for bodily personal boundaries is ignored.  Even when an individual in a crowd simply brushes up against a stranger accidentally, they apologize.

This behavioral anomally around pregnant women has been framed in terms of the woman’s belly becoming public property – as if everyone has the right to touch it the way they would a soft blanket on display at a department store.  Attempting to explain a specific behavioral tendency that currently has me annoyed, I reached for an example my therapist might understand and came up with that of pregnant women’s bellies.  Aspects of my life are being treated as public property.

Approaching a bus stop where I was to wait for a friend, I was asked by a man if he could pet my dog.  I said no explaining that while wearing the harness, she was working.  Apparently, he didn’t like my answer because a tirade ensued.

 

He started with the point that one little pet wasn’t going to be a problem.  I disagreed.  He then said I was being cruel and was I afraid my dog would hurt him?  I tried giving the complicated explanation about distractions and my safety.  He said if my dog was that badly behaved, she wasn’t trained well.  Was I just not training my dog properly?

 

I admit snapping at that point and saying something about having a dog previously that was highly distractible leading to me getting my nose broken.  That did not penetrate his skull.

 

About then, my friend’s “Just walk away.  He’s nuts>” penetrated and I tried leaving.  Really, I tried.

 

I had to turn back when he told me I should “Just stay home.”  Excuse me?  I don’t think so.

 

Let’s just say it went south from there and he was really insulting.

 

My point?  This man treated me, my dog and my life as though he had a right to comment upon them.  Everything about me had suddenly become public property.  I was the politician whose life is open to public scrutiny.  I was the actor living in the public eye.  I was just lacking any of the compensatory perks either of those roles supposedly bestows.

 

The worst part?  People stood there watching and did nothing.  Nobody said, “Hey, man, it’s her dog.  Leave her alone.”  In their silence, they were condoning his behavior.

 

To paraphrase a mother-to-be’s comment, “It’s my dog.  Keep your hands off!”  And, I would add, your opinions to yourself.

 

 

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.

Apples and Oranges

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A member of a musical duo I adore was chatting with me after one of their shows, which we have done many times before. He asked how I was doing and I replied that it had been a struggle of late.

As he put his hand on my upper arm, he intensely said, “You need to sit and really listen to the new CD. It’s all about that.”

I took it home. I sat. I listened. I did that pretty much every day for three weeks. I still couldn’t connect.

It wasn’t that the music lacked emotion or that something didn’t quite come together. It’s a great CD and the artists in question conveyed their message well. I just couldn’t identify with it. At all.

I had an extremely hard time with this fact. A musician I respected felt his work would speak to me. Why couldn’t I hear it?

It took five months for me to figure it out. They’re singing about apples while I’m trying to juggle oranges.

The music conveys the inner struggles around love and relationships, not so much about love gone wrong or love unrequited, but about how one’s thinking can keep you from finding love. Clearly someone went through emotional hell trying to discover why he longed for love but couldn’t quite embrace it. It has a more general message about hitting bottom emotionally and then finding your way through it discovering that the journey through the awful helps you better appreciate things. At it’s core, the music is about inner struggles to overcome internal obstacles.

My two ongoing issues are my medical complications and social isolation. Obviously the problems my body has developed cannot be solved by an emotional struggle. My esophageal muscles will not become strong because I searched my soul, figured out the problem in my head, and fixed it. In other words, it’s solution is not within myself to discover and implement. It requires doctors and tests and surgery and living with side effects and hoping it all works as advertised.

Social isolation seemingly has a more emotional basis for all I need to do is get out there, overcome my shyness or other maladaptive social behaviors, and I’ll meet people. That’s all within my control to fix, right?

What happens when you do all of that and the only result is frustration and a bone-deep belief that it’s not you? With every fiber of my being, I have come to believe that my social isolation is a factor of how others perceive me, social norms, societal beliefs, and how what we are consciously or unconsciously taught shapes our thinking. I could be Mother Teresa or Hitler and the bottom line wouldn’t change all that much.

In case you need a little bit of proof, I am more active in the world than I have been in probably twelve years, yet it has not had a perceivable impact on how many friends I have, the quality of those friendships, or dating. While it is true that many more people know who I am, that has not translated into meaningful human connection. In fact, in many ways being more socially engaged has only served to highlight my inherent aloneness.

So, while the musician was kind having the best of intentions to offer me solace, it didn’t work. They sing about apples and I juggle oranges –both fruit, but very different. American as orange pie? Fresh squeezed Florida apple juice? Okay, maybe the second one if Florida had the appropriate climate.

Hope

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While introducing a song entitled “Hope,” a local San Diego musician gave an inspirational pep talk that exemplifies what I have heard time and time again. To paraphrase: Everyone goes through hard times and the only things within your control are your attitude and your effort. With a good attitude and if you try hard enough, you will get through it.

He’s not wrong, exactly. He’s just talking about some subset of people to which I do not belong. They are folks whose “hard times” can be gotten through with the right attitude and sufficient effort. I’ve watched it happen, so I know attitude and effort work for many. I’m just not one of them.

Attitude can accomplish a great deal, like when I focus on what I might learn from a situation or the humor that exists within a predicament. It cannot, however, transform steps into a ramp. Similarly, my attitude can’t morph someone’s ignorant behavior into a more palatable experience. Being treated badly can be endured; Being denied access to something cannot be overcome by the powers of positive thought.

Similarly, effort is problematic for me. My chronic illness limits my energy leaving me with definite constraints on the sweat I can expend. Thus, I do not have the luxury of endless get-up-and-go necessary to fix misfortunes.

Perhaps the key here is what the musician meant by hard times. I’m fairly certain he wasn’t referring to the kinds of situations I encounter. Instead, he means troubles universal to all human beings such as the death of a parent, having something stolen or getting your heart broken.

What rang false as I listened to his pep talk are all the things I encounter each day that are unique to people with disabilities. Inaccessibility, lack of accommodations and people’s ignorance create some of the most distressing problems I come across. Attitude and effort cannot resolve all of them. Sometimes, I’m left with lousy circumstances not of my making and beyond my ability to fix. With them, speeches about attitude and effort leave me feeling hopeless not hopeful.

Case in point. I’m dealing with the way social perceptions of disability make friendships harder and reduce my chance of finding a mate. Emotional intimacy is as central to my mental health as calories are to my physical well-being. I cannot force people to befriend me nor can I change how they perceive me by thinking positively. If someone keeps you from food, eventually you will suffer physically. If what keeps me from adequate human connection is other people, how is that really different? How is trying hard or having a good attitude going to feed my soul?

I never know what to say to people like this musician. For them, effort and attitude work and I do not want to discount that. Unfortunately, he is talking about peeling apples while I’m trying to peel oranges.

So, I sit in the audience feeling like I do not belong alienated by someone who is just trying to help people get through tough times. I become the invisible other apart from the crowd I inhabit and isolated from the human experience being referenced.