Saturday, September 14, 2013


I find myself, not for the first time in my life, with a conundrum (a paradoxical, insoluble, or difficult problem; a dilemma). I thought I would take the problem to my readers, my friends and family, and find out if what seem to be questions without answers for me is a simple matter with a clear solution for all of you. In short, I am picking your brains, I am ASKING for advice and we all know that doesn’t happen too often.

Allow me to set the scene.  As you probably all know by now, (I do, on occasion, whine about it) I am legally blind. ‘Legally’ because there is a clearly defined and recognized range of vision (or lack thereof) that makes life a pain in the patooty. In my case I top the charts at 20/400. 20/400 is the top range they measure because, really, after that point what difference does it make? 20/400 means that if a person with normal vision can see, say, a rampaging elephant, at 400 feet, that same elephant would have to be 20 feet in front of my face before I would notice it was there. Even then I would not say, Gee an elephant, but rather, What is that? Is that a building?  No, it moves! A dear? When said elephant was about 15 feet away I would be saying Holy cow! That’s an elephant! By the time the fact registered and my brain figured out I was about to be mowed down by an elephant on the little dirt road by my house where I almost never even see a car, said elephant would be scraping me out from between his toes and looking for some other blind sucker standing in his way.

I try to maintain a strictly controlled environment and lifestyle in order to live with this ridiculous issue. I can avoid furniture not in its place (most of the time) and unless I am having a really bad day I don’t walk into walls or anything. Stairs have an irritating way of turning into ramps and vice versa and I look at signs as a personal attack on me by whoever hung them in the first place. I do not drive (you can say ‘whew’ out loud, I know the thought of me controlling 1500 lbs. plus of metal and plastic at high speeds is terrifying) I do not go into strange places by myself, I avoid crowds because I do not want to lose track or whichever kind soul is my seeing eye person at that time. When company is coming I vacuum in all the corners because I just assume that cobwebs have invaded that space.

My family is invaluable to me when it comes to living a mostly normal life. They read print that is below 14 points, they either vacuum or offer to in a kind and gently way that lets me know my house is turning into a pigsty. They point out steps, ramps, and cracks in the sidewalk. They describe things to me without being asked. For example, one of them would say ‘Holy cow, that is a rampaging elephant! Run!’ And the best, the very best thing they do is act like I don’t have an issue at all. They assume that I can do anything I want to, until they see otherwise.

One of the things they have always assumed I can do is work, hold down a job and do it proud. And I have! I have worked so called real jobs since I was 19 and moved back to the United States. I have done just about everything a person could do. Before I went to college I held down jobs as a maid, a fry cook, a telephone sales person. I cut grass, and stocked store shelves. I worked in a gym, I typed up lunch menus for the local paper. I babysat, and cared for and walked dogs. Once I got a college education I worked on computers.

Working on computers, for me anyway, is much easier than say wrestling a neighbors one hundred pound dog into submission while keeping track of three toddlers on a 100 degree day in August in Georgia or cooking 2000 pieces of chicken in a hot as hell fryer in an eight hour shift. Computers are inside, in air-conditioned buildings and computer jobs pay enough that you can finally pay someone else to walk your own 100 pound dog. If I pull the screen to my face, leaning hunched over about two inches from it I can see everything I need to, to do my job and do it well. Of course I can’t get to where the computer jobs are without help from my loved ones, or complete strangers on occasion, and public transportation.

I have ridden with FBI agents in rattle trap old cars held together literally with wire and duct tape. 

I have ridden with Health Department officials who spent the whole long commute trying to tell me how to fix my eyes because they assume, I guess, that I stay blind for the fun of it (so annoying, I can’t even describe it). 

I have ridden with co-workers who have alternately spoken to their mistress and their wife on the phone while speeding and shouting invective's at passing motorist. Do you want to know what is scary? Having the person whose hands in which you have placed your life out of necessity screech to a halt on the interstate while cursing and threatening some other jackass who also screeched to a halt. Blind woman, never driven, sitting in a lane of traffic while cars zoom past at eighty miles an hour honking and yelling watching two fools duke it out on the roadway in front of her.

As I am sure you can imagine I have not always been able to get a ride into work. My employers, a state agency much reviled by the general public, have worked with me without question and without too much resentment for 15 years on this issue. Oh happy day when I was allowed to do my work at home. I could log right into the system and write my code, run my queries, design databases and develop mailings, make calls, email, everything that I do at the office. Being at home means that when my eyes start to burn and water from fatigue I can walk outside for ten minutes and give them a rest. Being at home means that I can work late or log in early.  Being at home means that I can work nights and weekends if necessary. Being at home means that I can work when the office is closed due to inclement weather or water main breaks or bomb threats (much reviled agency). Being at home means that I can avoid the flu when 2/3rd s of the office staff is sneezing and snorting and coughing and choking all over each other.

And now, finally, we reach the crux of my conundrum.

Three weeks ago I was notified that no one would be allowed to work from home any more. This turns out to not actually be the case but I guess they thought it sounded better than your particular group will not be allowed to work from home anymore. Being reasonable I went to my boss and said, boss, you know I need to work from home sometimes for many reason, all relating to my (Lord I HATE this) disability. I can’t drive so unless the stars align and my husband can get me to and from my bus I can’t come in. (I was still smiling at this point.) NO. Boss, you know I have 15 years of good and excellent reviews with this much reviled agency, I am always available when teleworking (duh, I can’t drive dude, where else will I be?) and always get my work done. NO. Boss, you know when I am in the office I sit at my desk because roaming around is a bit difficult when you can’t see. I never deal with the public. I always deal with my users by phone or by email just like when I am home. NO.

At this point, I admit it, I lost it just a wee bit. What the hell? I demanded a reason and got the following: People think it isn't fair. Oh really? You want fair? Let them all coat their eyes with petroleum jelly for 54 years and try to manage. That would make it fair for me. The final result is NO NO NO NO NO. If I can’t work from home, I will not be able to keep this job.

Okay. I can quit and apply for disability. I qualify too, due to the whole rampaging-elephant-toe-picking thing. I mean, let’s face it, I really do have a disability, as much as I try to deny it. Working is a pain in the behind and eye balls and just getting me there and home involves a lot of people whom I do not really give a choice to. I would have some income and a lot of people could quit organizing their schedules around me.

On the other hand, I have always worked. I started babysitting and dog walking when I was 12 for God’s sake. I pay my own way, and except for in the very worst of times I manage to do it pretty well. I don’t like working but I do like getting that paycheck which I earned, despite my handicap. I am terrified of being utterly dependent; it goes completely against my grain. I have paid into the Social Security system all of these years but somehow I thought I would be old and (more) gray before I had to collect.

What to do, what to do? I am asking here for advice, for possible courses of action. What would YOU do in this situation?