Tag Archives: physical barriers

Amazing Revisited. Again.

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Don’t roll your eyes, but I’m back to that “amazing” thing. Again. This time with something new. Promise.

I get to a doctor’s office via my dog, my feet and a bus. When the receptionist discovers this, she is in awe of me. Previously I’ve thought about this behavior in two ways. I’m amazing because I have failed to live down to the low expectations another individual has. I also become amazing when a person imagines walking in my shoes and decides I am doing something they could not. Now I think there might be a third possibility related to obstacles.

When people consider me going from point a to point b, they generate a mental list of all the steps that they think involve sight– assessing traffic to cross a street, determining what bus pulled up at the stop, getting on the bus and finding a seat, knowing what stop to disembark at and so on. Each of these tasks becomes tagged as “obstacle for blind person” in their heads. Because I have surmounted these obstacles, I become “amazing.”

This mental process is distinct from the first two, for there are no assumptions made about what I cannot do. The accolade is *earned* by doing things perceived as *challenging*, granting the praise the distinctive flavor of possibility. My amazingness is engendered not by doing the impossible but by accomplishing the unusual.

I have less objection when amazing is about overcoming an obstacle. I’m not performing magic, just doing something that might be hard. I can live with aspects of my life being perceived as hard, calling for skills most haven’t cultivated or even simply requiring above average persistence. It feels far less dismissive of…me.

Many people with disabilities, myself included, have issues with the concept of overcoming. The root lies in the fact that typically what we are seen to overcome is our disability, not the physical and social barriers society has created. To me, blindness is my natural state of being, so deciding that I have overcome it seems absurd. Do people of color overcome their skin color or the societal inequities and prejudice they encounter? Do cis-gendered women overcome their biology? Disability is a form of human variation that is an inherent part of the person possessing the trait. They’re not something you can discuss in terms of overcoming.

So, while being seen as amazing for overcoming obstacles is not totally insulting to me, I do take issue when the obstacle is perceived to be my disability. It’s like seeing me as amazing for overcoming my curly hair or extraordinarily narrow feet. The concept literally makes no sense. Fish, here’s your new bicycle. Ride it.

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.