A Deadly Belief

This is part three of a Meniere’s page I’m slowly editing together. Part one is here. Part two is here. This is tangential, but still part of the story.


Then there was the effect of Christian Science on my family. I’ve struggled with where and when to mention this little gem of understanding, because mentioning it is fraught with tons of angst and potential explosive feedback. But understanding how I got to 40 without a diagnosis of Meniere’s, how I’ve never been diagnosed with dysgraphia even though I have had all the symptoms of it for the entirety of my life is a direct result of my mother’s early childhood indoctrination into Christian Science. Because of this fact, Christian Science has to be discussed here as part of this story.

Christian Scientists aren’t scientists; they pray to Jesus to cure what ails them. Jesus is their science, and they exercise their science in prayer rooms across the US. They still do this all across America to this day. When a child dies from lack of medical care, and the state where that child dies cannot prosecute the child’s parents, the law that allows this was lobbied for by the followers of Mary Baker Eddy, the founder of Christian Science. My mom and her immediate family were members of this belief.

Her distrust of doctors and medicine lead directly to her demise February 9, 2018. One of the mantras she took to her grave was doctors don’t know anything. It was her most repeated comment over the last months of her life, as doctor after doctor told her she had cancer and needed chemotherapy. You couldn’t dissuade her of this or pretty much anything else she believed at any point in her life.

This is a hallmark of most of humanity, I have come to find out. If you think you can change the average person’s mind you simply don’t know what you are thinking. People survive as long as they do by believing things, and sticking to those beliefs. My mother survived to the age of 77 and raised four children to adulthood based on her doing exactly what she deemed best at the time, and you won’t convince someone who has lived successfully by their own judgement for 70 years and more that what they believe is wrong. So give that idea up now and save yourself the life-shortening frustration.

Christian Science. If you are a Christian Scientist you don’t take drugs. You don’t see doctors, and if that religious upbringing was all there was to my mother’s belief, I think she would probably have gotten over it eventually. However, over the course of her life she has been nearly killed by well-meaning doctors more than once. All her life she’d been told gibberish by people who didn’t have the sense to pour piss out of a boot with directions written on the bottom (not that she would ever utter such a low phrase. In her estimation) so she knew that people believed insane things and discounted what other people told her almost by rote. She knew what she knew, but that left her vulnerable to the things she thought she knows but was wrong about.

Mom knew the value of modern medicine and never hesitated to get me antibiotics to treat the frequent illnesses that I had as a child, but she never stopped believing that doctors were pulling a scam on the sick. It all had to be a scam, somehow. She was never clear on how or why, but it was a scam, she was sure of it.

She never stopped believing that people would get better on their own if they just lived a better life, ate better food, got the right kind of nutrition. It was the failure of this belief, that healthy living was all you needed to keep from getting cancer that killed her a decade early. Had she not had encounters with believing doctors who proposed treatments that proved near-fatal, treatments that were fatal to her mother. Treatments that decreased the quality of life for the patients she tended. Patients that died anyway. Had she not watched time and again as things were labeled bad be relabeled good with more study and more time. Had she had different experiences with the medical community, she might have said yes to the promising new treatment the doctors wanted to try. The same treatment that saved president Carter’s life. But she didn’t have those experiences, and so she didn’t get to live that extra decade.

Who should be blamed for that?

Dysgraphia and Meniere’s

Lera Boroditsky|TEDWomen 2017 – How language shapes the way we thinkFacebook

I was telling my Physical Therapist about this subject at my last PT appointment. I used to be great at orientation. As a teenager, I loved maps, but I almost never needed one. I could find my way around quite easily by simply knowing which way the road went. I could build entire architecture projects in my head, a crucially important visualization technique that allowed me to understand how the various parts of any of the assemblies I worked with related to each other. I believe this was an outgrowth of my need to synthesize data without being able to write anything down, a side effect of dysgraphia.

Meniere’s has taken this away from me. The need to reinvent myself from the ground up with the systemic demands that a malfunctioning balance mechanism places on me included in the mix, has left me incapable of mapping direction any longer. I simply don’t have the free cognitive space within which to build complex structures including being able to remember where I’m going without a mapping program telling me which way I should go. I get lost quite easily now, apparently like most English speakers do according to the data discussed in the TED talk. Maybe it is time to learn a second language, one with ordinate directions built into it. Maybe that would help?

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Why is Work Making Us Miserable?

FT Podcast Feed – Editor’s note: The feed is behind a paywall now.

Lucy Kellaway‘s podcast episode Why is Work Making Us Miserable? made me wax nostalgic for my working days of yore.

I had (still have) a love of architecture, a desire to understand a process and to make it work seamlessly. This made drawing architecture doubly or triply interesting. Generally I was dealing with at least two processes; how to use the tools I had effectively and quickly, and how to draw so as to produce the most insight into the finished design the leadership of the design team wanted. On the best projects I was also learning about the process the architecture would enable. Public speaking or sales or manufacturing. Even parking garages had unique traffic flows.

But all of that doesn’t add up to loving drawing, which is ultimately what my job was. I haven’t drawn a thing since struck with the epiphany that I really hated producing illustration. That I am unapologetically bad at drawing by hand, and that I really wanted to be doing anything else.

I learned to crib graphics as a method of timesaving. I would type or have someone else type notes and affix those transparencies to my drawings. I would draw details in such a way that I could duplicate them easily using a Xerox machine, or wholesale duplication of sheets of work. The whole industry of architecture was undergoing a change as I underwent these changes, but it was the echos of “you’re slow, Anthony” in my own head that made it imperative that I cut every corner I could in order to turn drawings out as quickly as possible.

Coping With Dysgraphia

Is it weird then that I would still go back to architectural drawing in a heartbeat? I would. I would loathe drawing elevations and stairs again. Details and plans. But I would be a part of that process again. I would feel that my existence was  meaningful again, contributing to something larger than I am.

Facebook status backdated to the blog. I loved Lucy Kellaway‘s podcast for the Financial Times. She always made me laugh with her dry wit. I hope she is enjoying her new teaching job.


NPR – Happiness at Work: A Myth to Be Punctured?

Coping With Dysgraphia

For Gregory


When I was a senior in high school I had a friend who would borrow one of the novels I carried everywhere with me and casually doodle the most amazing cartoons on the flyleaf. His cartoons were better than the things published in MAD or Cracked. My memory of that time may be a bit hazy now, but they were better to me then. Funnier. I marveled at the effortless way the pictures just came out of his hands, at his ability to draw, to write. It struck me as such a wonderful gift, to be able to take a pen and have it just make the lines you wanted to make and to make only those lines in the ways you saw them in your head.  Freehand artwork, freehand writing, is almost magic in my eyes.

They didn’t have a word for my disability when I was in school. I was never quite like the other children. Teased frequently, I hid in books and stared at my desk, afraid of catching anyone’s eye lest I be subjected to more derision. I didn’t know what made me different, but I knew that I was different all the same. The teasing I was subjected to originated with my second grade teacher who thought it would be a good idea to have the other kids torment me to make me write faster.

In my mind the first and second years of elementary school seem to blur together. It’s hard to separate one form of abuse from another. One of my teachers thought that teasing me was the ticket to getting me to perform. The other one thought that daily corporal punishment was it.

Both teachers were dissuaded from their delusions by my parents. The corporal punishment stopped, but the teasing continued until I moved away from that town. I wasn’t to be free of the hangups that this teacher’s cruel methods of instruction inflicted on me until well into adulthood. To this day I remain a public school skeptic largely because of my experiences in school at the hands of the children and this particular teacher, evidence of just how much damage one wrong idea can inflict.

My problems in school were bad enough that the school insisted my parents take me to see a specialist. We went to see the same diagnosticians in Denver two times; once in second grade and again in 5th grade. The school insisted that there was something wrong with me; it wasn’t the teacher, it wasn’t the other children. There was something wrong with me. So my parents paid for the doctors and paid for the travel, and off we went on what was a grand adventure from the perspective of my seven year old self.

I remember the experience because it was such a rare occurrence to be in another place. The Rocky Mountains around Denver were about as different from the grassy plains of Kansas as you can get. It was the first airplane flight I could remember, and it made me love flying. I have a great love of Colorado largely because of the experiences I went through in Denver on those two visits.

The doctors were nice. They gave me various tests. Handwriting tests, drawing tests. Clearly they were looking at motor control in the manner after the time (late 60’s early 70’s) trying to figure out why I couldn’t write well. Writing really hurt. It still hurts. The stupid pencils never went where I wanted them to go. Lines were never straight. Letters were never legible. Cursive? Cursive was a practice in slow torture. Every assignment in school made me suffer in silence; unable to write and yet required to write. Homework went undone. Not because I didn’t want to do it, but because I literally would grow tired from the constant pain of writing and simply pass out on my homework.

My mother doesn’t remember the word dysgraphia being used at the time, but what I was suffering through was distinctly dysgraphic in nature.

I loved to read. Reading and writing are two completely different exercises in the mind. The words would sometimes get tangled up in my head, but the places I could go while reading were so much better than the reality I was facing that I just soldiered on through the occasional confusion. But writing? I flunked a semester of english my sophomore year in high school because half of my grade would be based on a term paper I would be required to write long-hand. The subject of the paper that was selected for me was of no interest to me. I asked the instructor for a different subject more than once, only to be told I would write the paper and to stop arguing about it. In one of my first acts of rebellion I flunked the class rather than spend a week or more in agony only to have the paper rejected because it couldn’t be read.

I have never taken notes in class. When told to take notes I would write a few lines and stop (a trick I learned early. If the page is blank the teacher will notice and scold you) Notes were pointless. By the time I had written down the first sentence I’d have missed the next three sentences. What I learned to do was listen and absorb so that I could repeat what was said almost verbatim, at least briefly. Eventually I learned to synthesize the information internally and was able to rapidly apply it to new problems without ever having to write anything on paper.

I only recently learned that the ability to synthesize data internally is itself a special skill. Most people cannot remember things, cannot apply knowledge, without writing these things down.

Few of my teachers believed that I could do this, that I could absorb and apply knowledge without first committing it to paper. They especially didn’t believe it because I failed so frequently to do anything demonstrative in front of the class. I was afraid to write poorly and so would take far too long at the blackboard to be able to demonstrate anything to anybody.

Even though the specialists who tested me in fifth grade issued written instructions, specific to each teacher about the challenges I was facing learning in a classroom environment, the instructions were discarded as lending favoritism to a child that the school teachers and administration frankly thought was the problem in the first place. My mother was livid at the time and still gets angry talking about the subject. Did they know how much all of this testing cost? Paid for twice over out of my parent’s own pockets? At the insistence of the school? Testing and findings to be discarded as too much trouble to institute, too much trouble to turn into a different teaching model?

What they did instead was slap a label on me. They called me slow.

I carried that label with me from second grade through seventh grade. The label and the torment only stopped at that point because I moved away from my hometown in Western Kansas for a few years; and when I came back to Kansas for my sophomore year of high school it was to a different town, Garden City, and to a different school. I never did spend any significant time in Leoti from that point forward. My nostalgia for the place I long considered home is leavened with ambivalence and rebellion. Rebellion against the label slow.

My sophomore and junior years of rebellion in Kansas under the custody of my father got me sent back to Texas and my mother. The all too familiar plight of children caught up in divorce. Shuttle diplomacy and holidays with the other parent. Custody battles and missed child support payments. From Leoti, Kansas and slow to Stinnett, Texas and rebellion. Garden City, Kansas and missed opportunities to Sweetwater, Texas and make the best of what you have left.

My senior year of high school in the late, hot Texas summer of 1980. My friend and his artwork were also transplants to the town and the school. Since we were both new, we decided to navigate the terrain together. Watch each other’s backs. The counselor lined out the required classes we would need to finish the year and graduate. He and I would be in organic chemistry together. A class we both found so boring that I would read and he would doodle on my books. We also had a few other classes together.

This is small town rural Texas, education isn’t something they spend a lot of money on. In the Kansas high school I had attended the previous year I had automotive mechanics and welding and a virtual smorgasbord of other classes I could have picked through if I had wanted to test my abilities in other areas. In small town Texas I essentially had two elective choices; metal shop and woodshop. Home economics would not be offered to boys. There was an FFA group, but animal husbandry was not my thing even if we had a farm to raise animals on, which we didn’t. When we were unimpressed with the first two options, the counselor did admit that they also had a typing class and technical drafting. These were clearly choices she didn’t think anyone should be interested in. When we went around to talk to the various instructors to see what we might be interested in, I had an epiphany.

An epiphany in the example drawings from the drafting class. Drawings that illustrated how to build things. I had been a model builder for years by that point, but it had never occurred to me that someone had to draw those assembly instructions. It was the drafting equipment. The drafting machines, boards, lead holders, straight-edges and triangles. The realization dawned on me. I didn’t need fine motor control as long as I had an edge to guide the pencil. I could focus on pressure and distance and not worry about direction. Writing? Slow, painful, tedious work; but block lettering gave me the ability to finally be able to communicate what I wanted to say clearly. Leroy lettering guides kept the hands moving, forming the correct shapes.

My mother could not believe I wanted to draw when I came home from school that first day. After everything I had been through, the problems I had writing and communicating all my life. Writing, she told me, was something I always wanted to do. I wanted to tell stories. She would write things down that I asked her to, and then I would meticulously copy each character onto another page. But drawing? She couldn’t figure out what the attraction was. If that was what I wanted to do, she wouldn’t stop me from doing it.

It was another senior class that finally showed me how to write painlessly. Typing. I knew touch typing would be a useful skill because I had already seen my first computer keyboard.

My uncle, Kenneth Zonge, was a genius. No two ways about it, the guy was hands down the smartest man I’d ever met by several orders of magnitude. Smarter than I am by about the same distance. He did early research into electronic mapping of rock strata, using computers to analyze the data and produce results that would tell miners where to dig for various minerals. His company Zonge Engineering and Research still does work in various fields in countries all over the globe. Back in the mid-seventies we went to visit him on a family trip, and he wanted to show off his portable computer.

Still looking for an image of the “Red Baron”

The computer was built into a suburban; as in, it filled the entire inside of the vehicle aside from the driver and passenger seats. You had to open the side doors to get access to the input and output terminals, sitting outside the vehicle in the Arizona heat. As kids, the science went right over our heads, but I do remember that he could type on a keyboard and the computer would print the clearest, most precise letters I had ever seen. It talked back to him. He played a text game for us and we were completely blown away by it.

Presented with the chance to learn how to touch-type as a senior, I took advantage of it. IBM Selectric III’s seem clunky and slow now, and error correction was a pain in the ass. But in the 80’s, for me, it was like being given access to electric light for the first time. I could type whatever I wanted on the keyboard and it would produce exactly what I wanted it to say almost as fast as I could think it. I had never had access to anything like it before. I asked to be able to do my homework in the typing lab, it was so much easier to just type it than it was to write it. I knew I’d never be able to afford a machine of my own, but if I could just be able to work in an office, there would be machines in the office I could use.

The pieces of my future were falling into place before me, whether I knew it or not. My intense interest in architecture could be accessed through drafting for architecture. My inability to write could be bypassed by access to a typewriter. After a year of drafting in high school, and a twelve month technical course at the local campus of TSTI, a twelve-month course that I spent eighteen months completing.

Eighteen months where I was badgered by my advisers. They told me I was a slacker. Told me that I was never going to be able to work in the drafting industry. they tried every way they could think of to get me to quit the course, because all of them knew that I couldn’t draw well enough to make it in the business world. Couldn’t apply myself with enough diligence to produce the work required of a draftsman.

But the instructors at the TSTI campus had taken delivery of a CAD system during my time at the school. And I knew, even if they didn’t, that the computer revolution was on its way. The world that they thought I would have to conform to, to exist in, wasn’t going to be a permanent fixture in my life.

I finally graduated and got my certificate and I went out in the world with my label of slow and my newfound tools, went out to discover the land of design and construction for myself. I went out into the business world and was almost immediately flummoxed by the fact you have to sit still in an office. 

Sitting still drives me absolutely nuts. Give me some decent shoes and rugged clothes, and I’ll spend all day for weeks exploring every inch of ground around me for whatever can be found. I never really thought about it; but I imagine being cooped up inside revisited the torment of school, being asked to engage in rituals I found painful and to gauge facial expressions I found confusing at best, incomprehensible at worst. Maybe I need the physical stimulation to make the mind work.

In any case, the first barrier to office work wasn’t actually the writing and drawing. No, the first barrier was getting over my own internal loathing of sitting still. That took years, longer than it took me to learn to type or to draw with precision. Eventually I learned to tap into what is commonly termed as flow now; and I could draw essentially effortlessly for hours at a time, longer and better than my peers. I had to be more dogged, more persistent. I had to be because I was slower than they were. That is an unpleasant, unavoidable fact.

My hand drawing production rate was much slower. However, because I had to take time to make sure the lines were exactly right, my drawings were also generally of better quality. This is not bragging, this is me relating the feedback that I got from dozens of years of work in the field. Yes, Anthony. Your drawings are beautiful. Can you turn them out faster? The same old label of slow coming back to haunt me.

“You are slow, Anthony.” Sounds like stupid in my ears, and it is meant to sound that way. Yes, I take longer to get there, but it will be worth the trip unlike some draftsmen I won’t mention. That is the line that ran in my head in response. I had to bite that retort back more times than I can count.

I learned to crib graphics as a method of timesaving. I would type or have someone else type notes and affix those transparencies to my drawings. I would draw details in such a way that I could duplicate them easily using a Xerox machine, or wholesale duplication of sheets of work. The whole industry of architecture was undergoing a change as I underwent these changes, but it was the echos  of “you’re slow, Anthony” in my own head that made it imperative that I cut every corner I could in order to turn drawings out as quickly as possible.

In the end, I did it.

Not because I got faster at hand drawing than anybody else. No, all of my peers can sketch rings around me. They always have been and probably always will be able to draw rings around me. The few times I’ve ever had to draw anything by hand in the field I was embarrassed to do so. My contractor friends, men who trusted my drawings implicitly, were always careful to assure me it would be fine, but I know just how childish my scribbles looked.

They were bad, and it was a barrier that kept me from advancing in the field of architecture. More than once I was offered promotion to supervisor or manager and I always balked at it. Why? Because supervisors and managers draw freehand right on the paper, and the draftsman just takes what they draw and cleans it up. I was really good at the clean up part of the process after years of practice. I was never going to be good at the freehand part. That was not something I would be able to do, and deep down in my heart I knew it was a barrier that I could not cross.

What changed things for me was the early exposure to computing at the shoulder of my beloved uncle. The exposure that made me understand the power of computers.

When you draw something in the computer, it can be duplicated endlessly without degrading the copy. The digital world allows you to be able to replicate whatever work you’d done previously by simply copying and pasting. Drawing guides are built in, so shaky handwork is irrelevant. The initial precision was the determining factor of replicability, and I had honed precision to a fine art already. It was just a matter of mastering the new tools.

Since I couldn’t get my employers to see the vision of my uncle’s suburban filled with computer gear, I took it upon myself to enroll in courses at Austin Community College so that I could gain access to the contemporary PC’s of the time (probably 386) while the motor control problem makes me a klutz with hardware, software is just a matter of understanding the logic of the system in a way that allows you to utilize shortcuts built into it. Classes in programming were more than I wanted to deal with and programming itself means little to me still, but breaking the security barriers on the simple GUI’s the school used at the time was child’s play, and I spent a year learning how not to get caught doing things with the computer that weren’t allowed, while learning the reasonably simple (for an experienced draftsman like myself) drawing exercises that I had to produce in order to pass the class.

When the classes were done and I felt prepared for what I saw as the inevitable future, my employers threw me a curveball and bought into a CAD program other than the one I had trained for. While I had spent a year learning AutoCAD, other CAD programs had made inroads in the architecture field and my employers purchased a program called CADvance and hired an operator from outside the firm to run the system.

Side note. It’s nice to know I was actually behind the times when I started my evangelizing for CAD and computers in the architecture sphere. I found this article over at Reanimation Library on Boyd Auger’s 1972 book, The Architect and the Computer quite interesting.  Quite interesting that in 1972 the trend towards digitization was this apparent to anyone, even if they were really only promoting the products they had created to digitize documents.  I really do hate to think that something that I thought was apparent was invisible to everyone else. Clearly, not everyone. /sidenote

Undaunted, I simply learned the far more straightforward command parameters for CADvance. The process took all of three days and I was already (unbeknownst to me) as fast or faster than the outside help my employers had hired. I mastered his system and improved on it before realizing I wasn’t going to be going anywhere in that firm and made the move to another firm. A larger firm that used both systems I already knew.

It was about the time that my new employers adopted a third system Microstation and I mastered that program (with the help of the Wife’s student software discounts, her then ongoing pursuit of an MLIS and her still invaluable proofreading skills. Love you too, dear) and then started helping my co-workers become proficient with this new third system that I began to realize that I wasn’t the slowest person on the floor. In the middle of a monologue of self-criticism about streamlining some process or other, the coworker I was talking to stopped me cold to inform me that you know you are the fastest draftsman on the floor, right? No, I hadn’t known it until he pointed it out.

Liberation from false constraints, from labels you never wanted, never accepted, is a feeling that is hard to describe. Hard to fathom. I will be eternally grateful to my friend and coworker who pointed this fact out to me. It was years of additional work understanding just what it meant to not be seen as slow and stupid. To not have to push back against a negative view, a constraint you internalized and never let go of until long after everyone around you had stopped holding the view and instead were puzzled by what continues to drive you to be faster.

A recurring argument that I had with a few of my supervisors and fellow architects (back when I had a license, back when I was one of them) was the common belief that people aren’t in nature when they aren’t working on a 2D paper surface. The misguided notion that the synthesis of ideas requires a fixed medium (paper) and a writing implement (pencil) to engage the creative brain.

Future architects are explicitly told by some college professors that they “cannot design in a computer environment.” This false limitation being taught to so many students appals me to my core. It invalidates everything about me, my experiences, my pain and trials and eventual triumph. Is it a good thing that I never went to college to learn architecture? Had I followed the traditional route, embarked on a master’s degree in Architecture, I might have had this additional bad information to wrestle with and put behind me. Computer design is wholly artificial and so it can’t be a place to design in.

Hogwash. 

If I accepted this falsehood as truth I would never have embarked on my journey in the first place. I’d be just as disabled and just as hopeless, but with no belief that I could ever be more than that. Paper and pencil are natural to the people who find them natural. If the characters will not flow from you hands using them, find some other medium to express yourself in. All of them are natural. Do what you can do and never apologize for having to take a different road than everybody else. None of them know what experiences you have, what disabilities you will have to cope with. What gifts you might have hiding inside.

This is the end of the story of Coping With Dysgraphia. It only gets me to the middle of my architecture story, a story I still haven’t told fully; beginning, middle or end. That story will have to wait for another muse, another time. My parting thought on the subject of dysgraphia is, I wish I could remember what the subject of that term paper was that I refused to write way back when. When I was a sophomore in Garden City in 1978 flunking out of english class. I could write a whole book on the subject now with the tools we have today. I wonder what kind of story that would have been then if I could have simply been able to do what I do now?

Listening to The Hero’s Journey on the TED radio hour inspired me to put this story into words. Specifically it was the story of Ismael Nazario who was convicted of a crime and sent to Rikers as a teen. There but for grace go I. The difference that the color of your skin can make.

Editor’s notes. Migrated to WordPress 2019. Added link to recently written abuse article. Minor wordsmithing. Migrated to new website August 5, 2020.

Those Halcyon Days of the Rolodex

Jim Wright over at Stonekettle Station on Facebook is a frequent read of mine. I have moved his notifications to view first in the Facebook interface. Why? Because he makes me laugh, and I need a good laugh these days. Today was no exception,

Once upon a time an address book was a simple list of names and phone numbers that you scribbled onto little squares of cardboard and put in a little indexed box and kept by the phone — which was a big black plastic box with a dial and a handset, attached to the wall via wires, and heavy enough to bludgeon somebody to death with.

Back then, how many people did you really need to call? A few dozen maybe. Relatives. Friends. Anybody else was listed in the phone book.

My mom still has such a box full of cards next to her phone in the dining room. I knock it over nearly every time I’m there. Damned cards, why do you still have this mess? I ask as I’m picking them up off the floor. Why?

See, with the invention of computers, an address book became something you laboriously copied from those little cardboard rectangles into electronic storage. In fact some of the earliest programs for home computers (remember when we called them “home” computers?) were address books and contact lists. Periodically something would happen, a crash, an upgrade, something, and you’d have to retype the whole damned list into a different machine. So you hung onto that little box of cardboard rectangles, the ultimate backup.

The first Smartphone, a Handspring Visor

This image is representative of the first smartphone. A device which was available long before Saint Jobs invented the iPhone. It had a music player before there was a iPod, too. I graduated from the Handspring Visor in the center to the Treo on the left, a device that was also available before the iPhone. It was cheaper, too.

I haven’t used a Rolodex (the little squares of paper) ever in my life. Other people kept Rolodexes which I transferred once to my daily planner (a 5 ring planner with transplantable address pages) and then transferred them one more to my Handspring (Palm) device. Every transfer after that has been electronic. To quote Egon “print is dead”.

I have never attempted to recreate my list of contacts because (and this is important) I never wrote anything down that I didn’t have to and I never kept things I wrote out of embarrassment at my poor handwriting (more on that here) consequently my address book exists in a few digital places and pretty much nowhere else and the sad part is I can’t think of anyone’s number aside from The Wife, the city emergency number and information number.

Or maybe it isn’t sad. There are a whole host of things that people remember for no good reason other than their lives require them to remember them. The Wife is my link to sanity and the rest of the world, so her number I really do need to know. Everyone else is findable through lookup or the eight or so social platforms that I would utilize if I wanted to talk to someone. I would use them because who calls anybody anymore? I don’t even talk to people I pay bills to unless I absolutely have to. The phone is as dead as print is, for all intents and purposes.

However, I may have run across the problem Jim is talking about. Android creates a phone-only contact that is your contact information, and it will delete your contact of the same name from the gmail interface. It will do this pretty consistently no matter how many times you create that card. I know this because I used to beam my contact information to others with Palm devices, which meant I had to keep a digital card of my information to beam. If there had been more Palm users this may have been more useful back then, but it is the reason I still have a card of my information today. Or had until Android removed it from my contacts list when I moved to Android and identified the phone user as the same name on the card. Android is probably trying to be helpful and is only helping me to discover more colorful forms of cursing in the process.

Facebook Status post expanded and backdated to the blog.

Getting Disability

I’ve been meaning to write this post for years.  When I started the process in 2005, I never dreamed that it would take me several years and multiple advocates just to secure the disability income that I had paid for through my taxes for my entire life. But it did, and when it was finally finished my then attorney said “you should write this all down so that other people can find out how this is done.  I’ll even refer my clients to it” (I’m going to hold her to that one) but months turned into years, memory fades, depression is an evil beast, and procrastination is a self-fulfilling prophecy.

A few days ago a Facebook friend of mine posted a link to an article about Alecia Pennington. Now, I don’t know how much of her story is true, but her tale of being denied basic services due to lack of documentation reminded me of the troubles I went through getting my disability approved.

…and it all started with the lack of a US birth certificate.  Well, actually it started with a friend of a friend who said he could act as my advocate for my Social Security claim, but several years later it ended with my getting my own passport.


I gave up working very grudgingly. I had been out of work for months before my last official full time job. I worked some contracts in those months, but mostly I just looked for work and wished I could get hired on somewhere. This lack of full time employment went on for almost a year, maybe more than a year, and then I was offered two jobs simultaneously. There was a job available for me in Las Vegas that would have required me to move the whole family (I’m actually glad I didn’t take that one now) and the other job was here in Austin, working for an architect who was adamant he needed me.  He said he knew what I was good at, was aware of what my health was like and needed me to save his business (his words) So I agreed to go work for him and turned down the job in Las Vegas that was offering more money.

I spent eight months working at my last full time job. Less time than I spent trying to find that job.  Eight months of learning another CAD system (I think that’s 5 different CAD platforms) documenting the tools for other users in the firm, automating the process of modeling and document production as much as possible. The coup-de-gras for this whole endeavor was producing finish-out drawings for an office space in less than a day, just to demonstrate how the process could be completed quickly.

That work, the kind of managerial design work I loved getting into, coupled with spending an excessive amount of time on paper getting to that point, all while suffering with weekly active vertigo and the accompanying brain fog that slows mental processes (a side effect of the vertigo) I spent months finishing the modeling and documentation on the building that was my primary responsibility, when that project probably should have been finished in weeks. That fumble that I couldn’t explain outside of sickness ultimately left me jobless again with a family to feed and even fewer possibilities than I had a year previously.

I was able to get commended for producing an entire project’s documents in a single day, and get fired for being sick too much, all within the same 8 month period.

Unemployed, February 19, 2005. I was literally hopeless at that point. The months of contract work that I had engaged in before that final full time job had taught me that I wasn’t as good at my job as I remembered being. The two or three part-time contracts I got after that last full time job simply underscored this fact. I was failing to do the work required because I could no longer picture the construction in my head as I had done previously, the mental trick that allowed me to do the job that I wanted to do was getting harder and harder to grasp.

I didn’t know what else I could do, and the bills kept coming in, my health care incurring mounting costs of its own on top of everything else. I was spending a lot of time helping a wheelchair bound family friend then, and she suggested I contact a friend of hers to see if disability was something I could get. Something to keep the roof over my family’s heads.  Given that the only remaining choice that appeared to me was life insurance coupled with a fatal accident, I figured I’d give the government a chance to own up to the promise that I could rely on it to be there when I was in need. So I called her friend, and we started the process.

The first thing you need to know about applying for disability is that you have to have doctors on your side in order for the application to be successful. You have to have a medical finding in writing. A statement from a medical professional that you have an illness which is covered as a disability.  Luckily for me Meniere’s is one of those illnesses, and I had an ENT who was happy to backup my disability claim. So we filled out the government application forms, got the statement from my doctor, and then we filed all the documents and waited.

You do a lot of waiting when dealing with the government. Every time I mention filing or documents, you should understand that at least a month goes by before there is a response.  That is if you are lucky.  If you aren’t lucky they lose your paperwork and you have to refile and wait another month (that happened more than once) It’s also worth noting that every single application for disability will be denied the first time. So if you don’t intend to appeal, don’t even start.

The first application was denied (of course) So we appealed. That appeal was denied. On second appeal, we had to go before the administrative law judge. So I got all dressed up and went to that hearing, prepared to throw up on the judge if I needed to. That appeal was also denied (I probably should have thrown up on him) This was the point when I realized that what I needed wasn’t just an advocate for my Social Security disability claim. I needed an attorney, because the advocate I had just shrugged and told me he tried. Trying was not enough, in my book. I was owed disability and my family had to have income, one way or the other.

If you are thinking of pursuing a disability claim, start by getting an attorney on your side and save yourself some time. That should probably be the first thing to know, but it was the second thing for me. My new found attorney and I started another application through the process.  This second application had secondary documentation and signed affidavits from witnesses. This one was also denied the first time through, just like the last one.

We appealed. The appeal was denied.  We appealed again. Then one day (months later) much like any other day in the life of the average chronic illness sufferer. Desperate. Feeling alone. Feeling like the world just wants you to die quietly somewhere. My attorney called. She said “the Meniere’s isn’t enough by itself. We can’t get approved with just the Meniere’s.”  She paused for a bit.  “Do you think you are depressed?”

Am I depressed? Well, I couldn’t very well admit that suicide was my only other alternative to government assistance (not without ruining the viability of that option) the only other alternative if I wanted to see my family fed. So I had to admit that I was struggling with just a little bit of depression. The entire tone of the conversation changed. She said something like that will make it much easier for me and got back to work on my case.

I had almost given up the faint hope that disability would offer when the approval for my claim finally came through. After two years of applications, denials and appeals, I was approved for disability payments.  Just in time too, because we had scraped out the last of our savings and were in the process of hocking valuable items in order to get the bills paid that month.

The citizenship problem (2008)

There was just one problem, though. One tiny little hitch.  Hardly worth the bother, really. See here, Ray Anthony Steele, you aren’t a U.S. citizen.

Excuse me? I’ve paid taxes my entire working life, starting at age sixteen. I’ve never failed to file, I’ve never failed to pay. I even paid twice some years. Every time that the IRS audited me I wrote them another check, and they audited me every year that I was a card-carrying member of the Libertarian Party.  I’ve paid my dues for 30 years. I think I’m a member of this club, this club called the United States, and I would be seen that way by the government except for one tiny little problem.

When getting a Social Security card, make sure that you bring with you all the documentation required to prove US citizenship; do not, under any circumstances, allow the person handling your application to harbor any illusions that you are not 100% a US citizen or allow them to submit the application without insuring that the box “US citizen” is checked.  This is of paramount importance.

I was born overseas to parents who were in the military, stationed overseas. The hospital on the base where my parents were stationed didn’t have the ability to handle a premature birth, and I was early according to the doctor’s charts. So my mom went to where the premature birth care was, a hospital off-base that wasn’t considered part of US territory. All US military bases are considered part of the United States, just as all embassies are considered part of the country they represent. I wasn’t born on the base, I was born in England, at the hospital my mom had been sent to by the military doctors. As a consequence of this little snafu, I have dual citizenship.  I’m a limey (it explains my love of a cuppa) as well as a US citizen. I have one of those birth certificates that makes conservatives sleep poorly at night knowing I live next to them.

When I got my Social Security card back in the dark ages before computers, we went in with my British birth certificate.  They told us no problem and marked me down as not a US citizen. Forty years later, it really is a problem after all.  It’s a problem because that little notation on my Social Security record means I can’t claim benefits from the US government. So, so long Mr. Steele, don’t let the door hit you on the ass on the way out.  It matters not at all that taxes are deducted from our paychecks every time we earn a wage.  It doesn’t matter that both our parents are American citizens. What matters is the checkbox next to US citizen on the Social Security form. Believe it or not it is true. Foreigners can not qualify for benefits.

According to the computers at the Social Security Administration, I wasn’t a citizen. We had stumbled across this fact earlier in the process and when it was noticed by the Social Security representative who filed my paperwork I was assured that if the claim was validated, the citizenship problem wouldn’t be an issue. I believe the phrase not a problem was repeated then, too. Except it was.  Because my birth certificate is British.  Very clearly British and not American.  What was needed to clear this up was a record from the embassy in London stating that I was an American citizen born to US parents. This was a piece of paper I didn’t have.

The document I wished I had at that point.

At this point I started talking to immigration attorneys. Immigration law is a tangled jungle of lies and deception; and nobody, not even non-immigration attorneys have a clue how immigration decisions are rendered. I’m not even sure immigration attorneys know.  I did find out that the specific document I needed was called a Council Record.  If I could find that document it would prove that I was an American citizen born abroad, and I would qualify for disability.

A Council Record is an obscure reference for those who aren’t up on all this legal mumbo-jumbo. I’ll try my best to clear up the confusion here. The council (or counsel) in question in this instance is the United States ambassador to England and the United Kingdom. He is the councilor that has jurisdiction over births and deaths in the country that he is ambassador to, ergo Council Record. If you were born overseas you should have a document like the one above that says you were born to US citizens overseas. That is your US birth certificate, for all intents and purposes. Hang on to that document if you run across it. It is your lifeline to access government services.

I didn’t have a council record. I had never seen said document before. I had no idea what it looked like, so I started talking to relatives. I talked to my mom first. She remembered that I came into the country on her passport, that I was listed as a US citizen when I entered the country. Unfortunately she couldn’t find that old passport, it had been lost somewhere in the 20 or so family moves that had occurred since the 1960’s. So I went back to the immigration attorney. He told me it was possible to request a copy of the passport, if I was listed on the passport.

So I found that form. I filled it out, got it notarized and sent it in. Then I waited. And waited. And waited. I waited a long time, longer than any of the other times I waited on a government response through this entire multi-year process. The State department eventually did find and mail the passport record back to me, a lucky break at last, and I was able to use that record to apply for my own passport. That passport made me a citizen. After forty years of productive life in the US listed as a non-citizen, I officially became a citizen just to get disability benefits. There is some humor in there somewhere, I’m sure.

…and The government said congratulations citizen.  Here’s your first check.

Hang on now. This check is for one month. I’ve been working on this process for nearly 4 years now. Am I not owed disability since the date of my first application? “Well, yes” the government said. “That would be true if you had been a citizen when you first applied. But you see this date on your passport, the one saying it was issued last month? That is when you became a citizen.” Once again, have a nice day, don’t let the door hit you on the ass on your way out.

Nothing doing. I am not giving up now. Four years I’ve been at this. Four fucking years. I’m not stopping till I get my four years of blood back. At this point I’m trying to exude patience and understanding, just to see if I can get through to the bureaucrat on the other side of the desk.  I have this passport because my mother brought me back to the US on her passport back in the 1960’s.  That passport from the 1960’s makes me a citizen. A citizen for my whole fucking life. It says so right on this document.

…and the government replies, “Well, that might be true, but that just means your mother was a citizen and she brought you home with her.  Was your father a citizen?”

Was my father a citizen? Was my father a citizen? Well, he was in the United States military at the time I was conceived, so for all of our sakes I hope he was. I mean, we don’t want any foreigners fighting in our ranks or having sex with our women, that would be unthinkable.

Robert Allen, the reason
I’m stuck with Ray Anthony

I don’t know my biological father. I sent the man an invitation to my high school graduation even though I had never met him in living memory. He never replied to the invitation, has never attempted to get in touch with me at any point during my life. For all I knew he didn’t even care if I was alive or not. I was raised by two different men instead of by my biological father and both of them tried to be dad and failed in various ways. I have never seen a page of correspondence from my biological father anywhere in any record that I kept or my mother kept.  He’s a cipher to me. A complete unknown. I wouldn’t know where to even contact him at this point. I don’t know if he is still alive (not sure if I care either) I’m sure he had a Social Security number, I’m sure he was a citizen. I’m sure he has a military record.  I have no idea how that information is dredged up without contacting his family, which had also been tried previously and ended in failure.

So I asked the Social Security administration if they knew how to find his number, how to track down his military record. I started putting out feelers, once again trying to get that information, looking for his family to contact. However, the Social Security administration came up with the information all by themselves. Proving once and for all (for me anyway) that they aren’t all demons placed here on Earth just to torment us average folk. They attached his file to mine and approved the back payments without my having to do the costly and time consuming legwork of tracking down my father and armwrestling him mano-a-mano for his Social Security number.


After that. After the years of fighting. After the many setbacks. After the successful conclusion of the application and subsequent reversal of the judgement that I was not a citizen. There was a year or two of argument about paying my attorney and discovering that they had withheld two attorneys worth of money from my back payments, and so they should give me money rather than try to take money away from me to pay my attorney. But, I was a citizen and I was getting the disability that I had dutifully paid for all my life. My children had a home. We had food on the table. I was satisfied.

Then my dad died. The man who tried hardest to be dad, to care. The man I could rely on even though he wasn’t married to my mom anymore. Jack Steele, the man whose name I carry with pride, died. A decade of battle with cancer was finally over. He made up for his earlier failures, and I accepted his apologies and considered him my dad for a good number of years before the end, even though his genes are not my genes. I loved him. I loved his family and their history. I was very sad to see him go.

While we were in Colorado preparing for the funeral, going through old records and photos, reminiscing about the past, his last wife (my second mom. I think I have 4 now. Maybe even 5. Well, mom is mom, but then there are other moms. Yes, it’s confusing) she was suddenly struck with a memory. When they were going through the attic at gramma’s house preparing it for sale, they stumbled across a box of stuff that had been shipped back to the US from England when mom moved back to the States with me. There was a document about me in the box, and she didn’t know if it was important but she thought I’d want to keep it. After rummaging around in a drawer for a few minutes, she produced the Council Record that would have saved me years of work had I only known who to talk to about it. I just thanked her and gave her a hug. What else are you going to do, at that point?

That’s it.  That’s my disability story finally written.  I should probably see if I can track down the document numbers for the documents I submitted, just for clarity’s sake.  But right now I just want to step back and admire the fact that I’ve written this damn thing.  It took me long enough. Longer than it took to get my disability approved? Just about.