With Water, Rudder and Pilot

It’s strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it’s all different.

This happened a couple of days after I wrote

The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me.

Actually, I’ve come to realize it’s not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don’t know how much energy I will have each day, I don’t know what barriers to access I will encounter, and I don’t know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that’s one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown.

Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It’s just not likely and people tend to count upon that and learn to cope when it’s not the case.

I cannot move through the world playing the odds that it will be smooth sailing because it’s so often not. I’m more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness.

I guess it’s the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge.

My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier.

I’ve been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn’t that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn’t I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there’s a safety net?

Waterless, Rudderless, Pilotless Me

Circumstances are unfolding in my life and I find myself without a frame of reference. The voice inside my head that can predict how a given thing will impact my life, from energy it will consume to amount of time needed to process, is without words. The oddest part is that it took me literally more than two weeks to realize this. For the past two-and-a-half years, medical drama has been a fact of my life. It took two of those years for me to stop denying that reality. Now it looks like the cause of my tracheal stenosis is known – my esophagus muscles and my stomach – and that needs to be fixed before my trachea can be addressed. The most viable solution involves surgery just given governmental approval. Then I’ll have to have surgery on my trachea to remove the damaged part. It’s not a common surgery and requires five days of hospitalization to make sure the sewed together ends don’t (Yikes!) come apart. Under the best of circumstances, I do not deal well with medical matters. These strike me as not the best of circumstances. Lately I find myself reading fluffy novels, watching bad television, taking my dog for work walks, going to yoga, and sometimes trying to tackle one of my volunteer things. Not a lot of volunteer stuff is happening. I’m sort of unable to drag myself away from the books and TV. Heck, I’ll even simply sit there. It’s like there’s nothing left in me for anything requiring my soul. I’ve been beating myself up about this for a couple of weeks. “Get off your butt and DO SOMETHING!” my brain screams. It falls on deaf ears. “Why are you just sitting there?” gets no response. This isn’t exactly depression, though that would be understandable. It isn’t exactly escapism, either. It’s as if my inner batteries have been drained past empty and I’m trying to recharge them with the weakest of power sources. today it came to me: I don’t actually know how to handle this. I am a fish out of water, a boat without a rudder, a plane without a pilot. I’ve decided one I hope useful thing. I get to read books, watch TV, and even sit there. I am allowed to do it until I’m so bored that I do something just to shake things up. My commitments can wait. I’m going through something hard. Maybe grace under this pressure is achieved by not doing things that increase my stress. An, yeah, I wrote that. Astonishingly, I even think I believe it.

Disability Has A P.R. Problem

“Blindness can be reduced to a nuisance” is a tagline used by the National Federation of the Blind as shorthand for what proper accommodation can accomplish. With adequate training, adaptive technology, and alternative formats, the barriers created by a world that functions on a visual level are eliminated and only small concerns, such as taking the time to label items, remain. The visual is conveyed via other forms of sensory input making the condition not particularly disabling. The same point has been made in relation to people with mobility impairments and those who are Deaf. The social model of disability, built around the concept that the way society works is the source of disablement, furthers this notion. Living in a world where a wheelchair can go everywhere and help is available if ever needed shapes a reality in which being a wheelchair user isn’t a huge problem. Disability rights activists argue for accessibility in all things so that people with disabilities can move through the world with the ease others take for granted — do B instead of A and then everyone can play. It is a very credible line of reasoning until one considers the dirty little secret that not all characteristics of disability can be reduced by accommodation to a nuisance. How can chronic pain be made only an annoyance? What method reduces lack of energy to an inconvenience? When a psychiatric condition impacts a life, can its effects be mitigated by the equivalent of a ramp or Braille menu? As someone who lives with both blindness and chronic illness, I know the first is reducible to annoyance and the second profoundly impacts my life no matter how the world functions. Yet even I talk up accommodations whilst avoiding mention of things that cannot be resolved in the do B instead of A and everyone can play formula. As a community, we remain taciturn about the aspects of disability that aren’t… fixable. We are profoundly uncomfortable with the idea that sometimes disability can be difficult no matter what anyone does. I’m pretty sure it’s a public relations matter. If we admit disability cannot be eradicated through accommodation and societal change, then why would the average non-disabled person bother? We need the persuasiveness of the absolute do B instead of A and all will be well. One can’t sell a car on its safety features by listing all the ways airbags can fail and one cannot engender profound social change by acknowledging all the ways that change will fail to fix the entirety of the problem. As a people, we want everything to appear complication-free, even when it’s not. Non-disabled people seem unable to swallow the idea that disability isn’t a lousy fate. Arguing ramps and Braille an ASL interpreters reduce that destiny to nuisance seems implausible. Convincing anyone that there is a way to accommodate pain down to an annoyance seems impossible. Perhaps the honesty of admitting disability is sometimes hard will ring true and then we can argue that it will be less horrific in a world that doesn’t function on assumptions of able bodies and “normal” minds. Yet conceding the hard aspects of some disabilities tends to evoke pity, a mindset many never leave for it is far easier to feel sorry for someone than to make the changes necessary to address the facets of disability that are resolvable. If we paint disability with the accommodation-fixes-everything brush, non-disabled people don’t believe us. If we are honest about some parts not being fixable, then non-disabled people see no reason to bother trying. Unsolvable problem meet unmovable rock. This is why I believe disability needs a P.R. guru. This post is for Blogging Against Disablism Day 2012 and a comprehensive listing of the blogs participating and pieces posted can be found at Diary of a Goldfish.