Swimming Versus Drowning

Waiting to cross my least favorite intersection, I was listening intently to the traffic pattern when someone approached. “Do you want some help?” a male voice asked.
“Yes, please. I hate this intersection.”

As the person walked with me across the street, he said, “I was hesitant to ask if you needed help. The last blind person I asked yelled at me.”

“They yelled at you?”


“Wow. I mean, sometimes it can drive us nuts if we don’t need the help, but yelling isn’t called for.”

At the sidewalk, we parted ways, but the conversation stuck in my mind. Several months later I was thinking about what I assume is a disability urban legend. A person in a wheelchair rolls to the edge of the surf, slides out of her chair, and moves out into the water, swimming. A man in a boat comes along and exclaims, “Let me help you!”

The disabled person looks up and says, “You may think I’m drowning, but this is the way I swim.”

The message of this tail is clear: what looks like failing to some is succeeding to others. The stranger so helpful to me must have earlier encountered a blind person who was seemingly having problems but in actuality was doing just fine.

As a blind person, the way I do things sometimes looks rather odd. Chopping vegetables is an excellent example. After the third time someone took the knife away from me, I learned to pave the way with a new person before starting. “You might not want to watch. It looks like I’m going to cut myself, but I won’t.” This preemptive strike saves me from feeling frustration when someone assumes dangerous when observing my well-honed technique.

To put it in a context more universal, think back to your childhood when you proudly presented your mother with the gift of a drawing. “Oh, honey, she said, “what a beautiful flower.” Your small child heart fell because you took three hours to depict Rex the family dog. It is an ego-crushing dose of reality.

Here’s the core of truth for me:An outsider is unable to truly judge success versus failure by observing. The parent cannot read the child’s mind and correctly interpret the intention. The sighted person cannot decide if the disabled person needs help or not. They have no context in which to judge whether a blind person waits at a corner to orient herself or loiters hoping someone appears who can offer assistance.

So, what’s the sensitive person to do? To avoid hurting their child’s feelings, parents fish for more information. “Wow, honey, this is great. How long did it take you to make it?” Unlike the person in the above urban legend, don’t assert your assumption that the disabled person is failing by what you say – ask “Do you need help?” not state “Let me help you.” And, unlike a child, a disabled person can attempt to exercise some patience and understanding, or at least save the rant for her blog.

Navigating Life

Chronic illness and blindness often have diametrically opposed needs. The former necessitates coping strategies that minimize energy output while maximizing results whereas the latter requires methodical techniques with repetition or intense focus as crucial components. When contemplating a task, I must frequently navigate between conflicting needs of health versus accomplishing the endeavor. Oddly enough, literal navigation – getting from point a to point b – is the area in which I encounter this minefield most.
When you navigate with a cane, there are a multitude of things you attend to simultaneously: 1. your mental map of the route, 2. landmarks like street crossings relevant to your route, 3. stationary obstacles such as trees and poles, 4. moving obstacles like people and cars, and 5. sound cues that aid in walking a straight line. If you are me, add to that list an intense attention to obstructions at face level. Experience melds much of the above list into a sort of instinctive overall awareness of environment, but techniques can differ or conflict. For example, stationary obstacles are discovered by cane and sometimes sound while moving obstacles are only detected by ears. Awareness of face-level obstacles can take your attention away from those on lower levels. It’s complicated mental juggling that takes a great deal of energy in addition to the effort of actually walking.
Given that my chronic illness limits energy, I have a keen awareness of how much effort an activity requires and a tendency for frugal spending of the precious resource. Rides from friends are a staple in moving from one point to another. While I am eternally grateful to the people involved, I am continually frustrated by what I see as my dependency on others.
As my energy has grown, I have tried to increase my independent travel, like taking the bus. I admit freely that I am a wimp about it because I’m afraid. Afraid of getting lost. Afraid of strangers. Afraid of needing help. Afraid of looking like a fool. Afraid of, well, everything. I know these fears are ridiculous, but I can’t help it.
There is one thing I left off the above list – fear of getting too tired. I recently discovered that is not unfounded. Instinctively I believed that getting to a place might take so much energy that I would not be able to do the activity let alone deal with the return journey, so I avoided situations where I thought that was probable. Recently I had a doctor’s appointment and no ride. Since the office is 3 blocks from the bus route that runs past my house, I thought I should attempt getting there under my own steam.
To make certain I could handle the route, I walked it with my friend trailing behind. In fact, she had to trail far enough behind me that her sound would not give me any clues that might aid in following a straight line. Initially she reports having to bite her tongue so she wouldn’t blurt out information, but the urge slowly lessened. After we arrived at my destination, we retraced our steps my friend still shadowing me. A few minutes into the journey, we stopped and she said, “You are having trouble walking in a straight line.”
I replied, “Yeah, I’m tired.
Suddenly, I realized my instincts were totally right – I could get so exhausted that I might not be able to navigate successfully and avoid peril.
Guess it’s nice to know my assumptions weren’t keeping me from doing something otherwise possible, but damn. Before I had the possibility of doing things by myself and not doing it was somehow a choice. Now it is a fact and that somehow feels far more limiting and frustrating.
The up side of all this is that guide dogs exponentially reduce the energy necessary to navigate. While my name sits on the guide dog school’s waiting list I can contemplate my fabulous independence when my name reaches the top.

Celibate or Disabled?

Continually and consistently people tell me they would rather be than disabled. Then they often list a hierarchy of disabilities where x limitation would be preferred over y and z the least desirable. Personally, I find this to be worthy of eye rolling, but I resist the urge. To TABS this is a serious business, for they do not want to find themselves in a fate “worse than death.” And, yes, people do say they’d rather be dead than disabled. Frequently.
Recently pondering my involuntary celibacy and seeking perspective, I realized acquiring yet another disability would be preferable to continuing in this sexless state. It dawned on me that I may have a circumstance so horrific that people would actually pick disability over it: “Would you rather be disabled and have a fulfilling sex life or be non-disabled but celibate?” Finally some common ground.
Why, though, is disability considered such a horrid fate less desirable than, say, the ending of life? Perceived limitations that disability would impose. The socially constructed image most hold of our lives is that of tragic, pitiable, and devoid of happiness. That image is perpetuated by causes that focus on the negative aspects of being disabled in order to raise money by gaining sympathy: each time Jerry Lewis describes a child’s tragic struggle to walk, he adds another dark brush stroke to the picture of our lives. Every time somebody asks, “Wouldn’t you like to know there is help out there should you be stricken by this terrible plight?” the concept of disability as tragedy is burned deeper into the psyche.
Ironically, all the images of disability as merely a different state of being do not have the power to alter social perceptions. A man without legs climbed a mountain? Well, he must be an exceptional person. Not even a moment of thought is given to the concept that having no legs is possibly not the end of the world. The negative images have a persistence and strength that goes beyond what can be explained rationally.
Given these strong negative impressions, it is not surprising people only consider what their lives would lack if they acquire a disability. Even I would rather die than sit in a dark closet devoid of joy and human contact. The real tragedy in all of this is that being disabled is not that dark, empty closet, but simply a different way of living. Our biggest challenge is often these self-same negative images that make up the bariers we crash into when interacting with TABs. The true tragedy is that if people feared becoming disabled a little less it would actually be easier to be disabled.
Back to my involuntary celibacy. What’s a woman to do when she cannot attract romantic attention because everybody thinks she isn’t sexually active and she isn’t sexually active because nobody thinks of her in that way? Screaming loudly comes to mind.

Lens of Disability

Second Wednesday of the month means something humorous. Aside from being blessed by a total stranger who repeated himself because I was ignoring him, nobody has done anything worthy of my ridicule. So, something short, sweet, and light. A great dessert after all the heaviness.

Sometimes I feel as though this disability thing has gone beyond an avocation and reached the level of obsession. Often I bite my tongue so as to not yet again say, “AS a disabled person…” I am quite possibly “Jen The Broken Record.” Shockingly, nobody has attempted to muzzle me. Yet.

Recently, I had a revelation: Anything can be looked at from a disability perspective. Absolutely anything. What lotion will I put on after my shower? Well, if I am going out in public, the scent might negatively impact somebody with Multiple Chemical Sensitivity forcing them to avoid me or possibly leave the room. So, I reach for unscented lotion. How should I emphasize a phrase on a poster? If I simply use color, anybody who is color blind will miss the point, so I should probably use a change of font as well.

If disability creeps into such mundane considerations, no wonder it is possible to see more significant issues through that lens. Obama’s stimulus package? Oh, let me count the ways. Disabled people are often at the bottom of the economic ladder, so mortgage assistance is often not relevant to our lives. We cannot afford to buy homes. Instead of helping people get out of trouble they often got into eyes wide open, some of those funds could be better spent on accessible transportation or a food stamp policy that allows for increased amounts for those with food allergies or sensitivities resulting in higher food costs. San Diego is considering water rationing. Has anybody thought about people with mobility impairments who take longer to wash themselves or dishes? Public health concern anybody.

I still wonder if my life’s work has morphed into an obsession. So, I dare each of you to come up with a social, political, or economic issue that you think cannot be examined from a disability perspective. I’m not sure if this will prove or disprove I’m obsessed, but it should be interesting.

Can you pack your soul in bubble wrap?

Shock of all shocks, the face fascinates me. Composed of four of the five senses – sight, smell, taste, and hearing – the face is arguably the most important part of the external body. (I guess it could be disputed that ears are part of the head not specifically the face, but I see with my ears so…..) Communication is one area in which the face is crucial for the mouth usually produces language, the ears hear it, and the eyes gage facial expressions. Food is consumed by the mouth with both the tongue and nose involved in not just enjoying the experience but providing warnings of the presence of toxic substances. Eyes are also key in detecting dangers from the environment and their position in the front of the head is either the chicken or the egg explanation of body orientation. Looking at it like this I am not surprised faces are given so much attention and importance by human beings. I have some issues with the degree to which this significance has been magnified beyond the biological, but that’s a topic for another day.

My face and I have gone through quite a bit together. (Details can be found in “What My Classmates Never Knew.”) For years I hated it considering it to be separate from the rest of me: from the neck down, I was marginally acceptable, but my face was a different story. I loathed it, thought it was hideous, and if wearing a paper bag had been an option, I would have happily done so. The unacceptable nature of my face was the cause of all the surgical pain as well as the problems I had fitting in with my peers. In my mind, it was a separate entity that existed outside of who and what I was as a person. Known as disembodiment, this is a common mental construct for many disabled people who cope with internalized hatred of the “disabled” part of themselves by making it completely distinct from what they consider their essence.

In college I realized I didn’t have to do this. Eventually I found a way to inhabit my body with a bone-deep certainty that for better or worse nothing can shake. It goes beyond merely living in my own body for I know I am it and it is me. By necessity part of that process involved addressing my body image issues because being a form you loath is not particularly pleasant. Though I managed this, it is a far more tenuous thing. Loss of the rest of my sight, the ending of romantic relationships, and surgery to remove infected implants have shaken it for a time only to emerge sooner or later typically stronger for the experience. Looking back I know the steps I took to get to this place and the effort involved, but I cannot quite understand how I wound up here. Actually, of late, it’s more like there.

About 18 months ago, I started having issues with my facial relationship when I began wearing dark glasses to protect my eyes. People responded to me differently and some who knew me went so far as to tell me the covering of my eyes was a big improvement. One cashier actually looked between me and my photo ID then suggested I get a new picture. When I took off my glasses and said, “I think it’s just the glasses,” she became very quiet. All of has messed with my mind in countless ways. Who wants to be considered attractive while wearing glasses only to have the person flip out when they come off? Not me. Ever.

Because of the reconstructive surgeries and removal of implants, my face hurts constantly. For a long time it was only an issue of pain, but since the glasses it has become a constant reminder of how unacceptable my appearance is to most folks. Even though I’ve stopped wearing the glasses, I cannot seem to get my facial relationship back on track.

Rarely does my face receive positive attention either verbal or physical. For years I sat as doctors lectured about my face’s failings which had a definite impact on my body image. More significantly my face was touched by detached, clinical hands that caused pain. By comparison there has been little positive physical attention given to it. Beyond the fact that people are afraid of hurting me, I know we just don’t touch each other in that way except when being intimate. Given the dearth of that sort of thing in my life, my face has been neglected. I feel that lack as an ache so deep down inside I have no idea how to touch let alone tend it.

Sometimes I have an urge to hide my face because I feel vulnerable either purely emotionally or in terms of attractiveness. Oddly enough, if I happen to be naked and somehow feel either of these things, I don’t dive for my clothes but fight the yearning for a paper bag.

Fortunately I can mostly separate how I feel about my face from my actions. I haven’t reached for a paper bag yet, but there has been an increasingly intense urge growing to wear my dark glasses. The other night I almost lost the battle. I know sooner or later I’ll get a grip, but right now I feel as though my face is this misused creature yearning to be wrapped up in a soft blanket and stroked gently like we do to the backs of upset children. While I must be protective of it on a physical level – getting my face hit is painful and potentially significantly damaging – I feel its vulnerability on an emotional level with a sinking, knotted feeling in my gut. Knowing this feeling will pass does nothing to alleviate the fragility I feel inside.

Right after I wrote the rough draft of this entry, I began to read Emily Rapp’s “Poster Child: A Memoir,” which explores similar issues better and with more art than I can. Worth reading.