Missing Dog Poo and The Human Response

The other night, I took my dog out for a walk, she took a shit and I couldn't find it. This is not the first time this has happened, I lose dog shit all the time. On dark rainy nights, when she craps on a pile of leaves in autumn, in certain types of mulch dog shit's been known to vanish right before my very eyes, which is ironic, since my eyes are total dog shit. One of the limitations of albinism is poor eyesight. Technically, I'm considered legally blind, which is like being legally drunk, except when I wake up in the morning, my vision is still blurry and it stays blurry forever. Outside of the fact I couldn't play sports, which meant my father could never really love me, this disability has not been a major setback in my life. But my low vision has provided hundreds of little challenges, like missing dog shit. As luck would have it, we live in an era of incredible technological innovation. My iPhone can track my steps, play every song I've ever heard, shoot video in HD and connect me with all the people and knowledge on the entire fucking planet. It also has a flashlight. This flashlight has often been my torch as I crouched on hands and knees, squinting, searching, hunting for the treasure of a steaming log of dog shit. And you know what? Thanks to modern technology, I find that dog shit most of the time.

Large print books v. Kindle

English majors love to lament the passing of the bookstore. To hear them whine about it, our digital age is a tragedy. Oh, how they miss thumbing through the worn pages of their favorite canonical works. The smell of the ink on the paper, the weight of the book in their hands changing as they progress from beginning to middle to end. It used to give them such warm and fuzzy feelings, to leaf from page to page. But now everything's digital. They sneer, “It's just not the same.” With this last statement alone, I agree. Digital reading is just not the same. It is, in fact, one million times better than leafing through a stupid old book.

For a person who is legally blind, hardcopy books marked significant challenges, mostly related to typeface. Most books are printed in a very small font. In elementary school, any books I was assigned needed to be available in large print. Consequently, something like “Animal Farm,” George Orwell's allegory for the Russian Revolution, which is usually a fairly small book of about 115 pages or so, became an enormous, two-volume work when enlarged. These large print editions were made by photocopying the pages of the original book and enlarging them to fit heavy stock letter or legal sized paper. They were then bound using plastic binding of different widths. Imagine “Great Expectations” presented in three ring binders and you'll have a rough idea of the size and portability of these tomes. I know how they were made because I spent a summer making them as part of a job I had working at the low vision center. It was like making sausage, in that once I saw how large print books were assembled, I no longer wanted them. By the time I got to high school, it was ludicrous to rely on large print books anyway. The large print version of “The Scarlet Letter” contained more volumes than an Encyclopedia Britannica. So, I started reading with a magnifying glass.

The problem with most magnifying glasses is they only enlarge a small area through the lens. As a result, most of my high school reading involved me scanning line by headache-inducing line, poring over documents, lens to my eye, as if I were a detective looking for clues. I gave books on tape a shot, but they usually just put me to sleep. There were some books, mostly hardback editions, which I could read with my glassses, but if these weren't available, I was out of luck. When I didn't want to use a magnifying glass, a large print book wasn't available and the typeface on the hardback was too small, I'd just have to find good light and squint, squint, squint. In college, I squinted my way through all 1168 pages of “Atlas Shrugged” on my own, entirely in the privacy of my apartment, because reading it unaided by lenses and completely alone seemed like the most Randian way to experience her opus of selfishness.

Because I used a magnifying glass, large print book or held my face really close to the text, I was incredibly self-conscious about reading in public and would never go to a coffee house or library to read or study. Reading the newspaper or a magazine in public makes me feel like I'm on display. I feel like people are staring at me as I narrow my eyes to read, contorting my face and struggling. I felt like it made me look weak and vulnerable. It made me an easy target. It was just easier to isolate myself when I read.

When I went to graduate school to study Screenwriting and film, I was nervous about having to read all the scripts. But then I found out standard script typeface is 12 point Courier New. My desire to read something was no longer contingent on the whims of a publisher's choice in typeface. Whether TV, feature film, comedy or drama, all scripts look the same, in terms of their appearance on the page.
When I moved from LA to Chicago to teach Screenwriting and had to pack up all my books, I joked about how I should get a Kindle, but I didn't really mean it. Even though books had been so hard to read, I still really liked them as pieces of art. I love the way they look on a shelf, I love having them for reference, I love having them as trophies, proof of my education. But it sure sucked to pack them in boxes, haul them to the UPS store, pay to ship them across the country, then lug them up into my Chicago apartment and put them on shelves. Since shipping them here, I haven't bought a single hard copy of a book.

I bought a Kindle instead. Now, the typeface of the book I want to read changes with minor movements of my index fingers like I'm some kind of God. I have access to nearly everything ever written and my Kindle is smaller than a large print edition of a haiku. I can search for quotes, see what passages other people have underlined and I have no insecurities anymore about reading on the train, in coffee shops or in a library. My face is buried in a screen, just like everybody else. Somewhat ironically, because the viewing program adjusts the size of the PDF to fit the small size of my screen, the only works harder to read on a Kindle are screenplays. But that's okay, I don't miss bookstores or hardcopies of books. Nostalgia is stupid (except for this blog).

Driver/ Driver

From a very young age, it was understood I would probably never get my Driver's License because of my eyesight. When I was five or six, back in the mid 1980s, my Mom used to talk about the city of Boston as some kind of public transit utopia, a place where even a legally blind person could get around town. In hindsight, I think my Mom was only aware Boston had public transit because of that song by The Kingston Trio, (Charlie on the) “MTA” about a guy being lost on the Boston public transit system. It was quite a shock to both of us about nine years later, when a new optometrist was examining my eyes and casually remarked, “You know of course, he can drive.” I wish I'd had a camera to capture the look on my Mother's face. I think she was more afraid than I was overjoyed.

The Doctor explained I'd need to learn to use bioptic telescopic lenses, which sound a lot more futuristic than they actually are. Bioptic telescopic lenses look just like a normal pair of glasses, but they have a small monocular telescope mounted on one eye. This small telescope looks like a jewelers loupe, but instead of being used to look at small details up close, the lens in this telescope helps the viewer see distances. Honestly, these incredibly high-tech, very, very expensive glasses look like I made them in my basement with a a drill, a hot glue gun and a broken pair of binoculars. But they are damn effective. Though the normal glasses lenses, I see the world with my usual eyesight through glasses: 20/ 200. However, through the monocular, I can see much clearer and my vision improves to 20/ 50, though in a narrow field. With two different lenses, I had to learn a whole new way to use my eyes.

Before I could even apply to get my Learner's Permit, I had to train with these bioptics for six months. The first thing I had to do was get used to wearing much heavier glasses with a telescope over part of one eye. Then, I learned to drop my head so I could look through the telescope when I needed to see things in the distance in greater detail, like when I wanted to read a street sign, or see if a light up ahead was green. Additionally, I had to learn to keep my left eye open and observant of traffic while my right eye focused through the monocular telescope so when I looked at distances, I wasn't turning a blind eye to half the road. It gives me a headache just thinking about it. Trying to describe it here, I have absolutely no idea how I learned to use these glasses. I guess a 16 year-old desperate for freedom can cultivate the patience to learn just about anything. Eventually, riding around in the front seat of the car with my Mom, I got the hang of the glasses. I tested with my Doctor and he said I knew how to use them well enough to get my Learner's Permit.

In order to get my Learner's Permit, I first had to prove to the officials from the DMV I could see things well enough to drive. I rode around as a passenger, reading street signs to these people for half an hour until they agreed I could see well enough to maybe have the chance to learn to drive. They gave me my Learner's Permit, which meant I could legally drive with either of my parents, or anyone who was a licensed driver over the age of 18. In Virginia, at that time, I had to have my Learner's Permit for six full months before getting my license. My parents attempted to teach me how to drive with varying degrees of success. Riding with my Mom was panicky and awful, as she would often scream I was too close to parked cars on the right side of the road or that I was veering into oncoming traffic. My Dad, who taught me to drive a manual transmission, was actually really calm and surprisingly laid back about it. He taught me how to accelerate coming out of turns, that if I have time to use my horn, I'm probably not in real danger and emphasized the importance of a clean car. At the risk of steering into gender stereotypes, my Dad was definitely a better driving instructor than my Mom. I also had to take behind the wheel instruction, which I took with a chain-smoking redneck named Scott who had the grossest fingernails I've ever seen and loved to listen to Rush Limbaugh and vehemently agree with the radio as if Rush could hear him. All that to say, not all male drivers are great. When it came time to get my Driver's License, I had to go with two DMV officials on a driving test. They told me I drove too fast, but gave me my License, which when I first got it, had restrictions saying I couldn't drive at night or on the highways. After a year of driving, I could apply to have these restrictions removed.

I bought a car from my Stepmom for $1.50. It was a 1988 Honda Prelude and I think there was over $2.00 in change in the ashtray. It was a black little two-door, stick shift with a sunroof, flip-up headlights and a speedometer that went up to 140. I drove it over to my friends' house and, being the dickhead I am, immediately called my Mom to tell her I'd been in an accident, just to fuck with her. She was not amused, but I didn't care. With a car, I could suddenly go anywhere and do anything. Not only was I free from my parents' tyrannical oppression, but I was free of the constraints of my vision. I could drive to and from school and work, just like every other kid. I had to pay for gas, I had to keep my car clean, I had to pay for repairs. The freedom and responsibility which came with driving were integral to my development as an independent human being.

My driving record was pretty flawless for a while. I got a few speeding tickets and was in a minor scrape backing out of a parking space, but after a year, I applied for an unrestricted license and was legally allowed to drive on highways and at night. Driving became completely normal for me. Many of my friends couldn't drive stick shift, so I taught a bunch of people how to do it. I'm embarrassed to admit I became very skilled at driving after a couple drinks. All in all, of my 10 normally-sighted close friends, I'd say I was a median driver. While I was never responsible for a real accident, I did have several fender benders. Parking and maneuvering a vehicle through tight spaces proved the biggest problems for me. I, at times, have lost a sense perspective on the size of the car and scraped against concrete poles, metal signs or other cars. Speeding was my most common moving violation. When I was at UVA, I racked up a couple of reckless by speed tickets and had to spend a Saturday in Driving School so my insurance rates would go down.

When I got a job in the Northern Virginia suburbs, I drove a Jetta to and from work just like every other suburban sad sack. I had an hourlong daily commute and driving was completely normal, until I got into a fight and my driving glasses were punched off my face. For a few weeks after I ordered new glasses, I had to drive with no bioptics, which was super illegal and dangerous, so of course I thought it was awesome. The new glasses arrived, even better than my first pair, and I kept driving. When I moved to Los Angeles for grad school, in one 23 hour span, I drove from Memphis, Tennessee to Flagstaff, Arizona all by myself.

I had gone to USC to be challenged as a writer, but I hadn't prepared for the challenges I'd be faced with driving in LA. From the moment I got onto the 10 freeway in Arizona, I knew things were different and not just because my nav system immediately crapped out. Every moment I'd ever spent in a car had been practice for the manic insanity of LA driving. The world was brighter, which made me squint, the drivers were far more aggressive and there were twice as many of them. The added stress of traffic, coupled with the added anxieties of grad school in a new place made driving in Los Angeles a kaleidescope nightmare of blurred lights and honked horns. LA offers all the worst aspects of suburban traffic with all the terrible things about the erratic behavior of drivers in cities. The cars I owned in LA became banged up, scraped and damp with sweat stains from my nervous pores.

Different states have different vision requirements for driving with bioptic telescopic lenses. As I learned the hard way, California is stricter than Virginia. In VA, the telescope only needed to improve my eyesight to 2/ 60; but in CA, it has to be improved to 20/ 40. When I applied for my CADL, which, incidentally, I only needed so I could keep my medical marijuana card, I could only read the line on the eye chart for 20/ 50. The State of California said I couldn't get a license there and that I should not drive with my VADL in the state. I was supposed to surrender my VADL, but instead I left the DMV, sold my car and bought a bicycle.

Riding a bicycle around Los Angeles was perfect for me at the time, except I never did get that weed card. The slower pace of the bike made things easier to see and its slim frame was ideal for nimbly knifing through traffic james. I liked getting the exercise and it was a great release for my pent up frustrations. Plus, when I got into fist fights on my bike, I had no expensive driving glasses to break. But, of course, I couldn't go see friends in Orange County, and anywhere I went, I arrived dripping sweat.

When I left LA for Chicago, I didn't have to worry about getting a license. Much like my Mom suspected of Boston, Chicago is a public transit and bicycling utopia, especially relative to Los Angeles or Northern Virginia. Here, it matters little that I don't have a license because my bike or the L can take me just about anywhere. And if not, I'll just get an Uber like a normal yuppie.

Further Reading:  My Life on the H List

What is Albinism?

What is Albinism?

Albinism is an inherited genetic condition which reduces the amount of melanin pigment formed in the hair, skin and eyes. The albinism gene must be present in both parents for a child to be born with albinism, and even if the gene is present in both parents, there is still only a 1 in 4 chance the child will be born with albinism. In America, about 1 in 20,000 people has albinism. I am one of them. Prior to researching this project, I thought the occurrence of albinism was 1 in 100,000 in America. There are places in the world in which occurrences of albinism are as common as 1 in 3,000 people. Most children with albinism are born to parents with normal pigmentation and eyesight.

People born with albinism have poor vision, which is not fully correctable with eyeglasses or surgery. Irregular development of the retina and abnormal patterns of nerve connections between the eye and the brain cause vision problems for people with albinism. Further eye problems often also develop. Examples of other eye problems associated with albinism include nystagmus, the involuntary horizontal movement of the eyes (got it); stabismus, muscle imbalance between the eyes, crossed eyes or lazy eyes (got it too); photophobia, extreme sensitivity to light (trifecta!); refractive error, either nearsighted or farsighted (Yahtzee!) and other problems with the development of the retina and optic nerve routing. Perfect vision is 20/20 and legally blind is anything below 20/200. Uncorrected, my vision is 20/450. Corrected, it's 20/200. Even with glasses, I, like most people with albinism, am legally blind.

For me, the challenges of albinism are an omnipresent wave of slights, petty grievances and annoyances and deep, impacting psychological wounds, all of which will be the subject of this blog, so, happy reading! While I experience myriad, hilarious and, I assure you, very, very entertaining obstacles you will enjoy reading about related to my albinism, rarely are these obstacles a matter of life and death. In Tanzania, on the other hand, people with albinism are hunted, mauled and murdered by poachers with machetes and machine guns. These poachers sell parts of the albinos' bodies to witchdoctors, who in turn use the pale body parts to make potions politicians buy in the hopes of bringing them good luck. There's a lot of information in that last sentence, so go ahead and read it again. I'll unpack it for you by phrasing it another way. In Africa, people with albinism are believed to be magical and politicians are corrupt. In the hopes of getting elected, politicians sanction the harvesting of albino body parts by war lords, who sell these body parts to witchdoctors. The witchdoctors use the albino body parts in potions to bring politicians good luck. This is not some ancient practice, this is happening today, right now. Albinos in Tanzania and Malawi live in constant fear of being butchered, which I suppose puts my bitching about people calling me Grandpa in a slightly different context.

It's not all bad for people with albinism around the world. In the San Blas Islands, an archipelago off of Panama, people with albinism are very common among the Cuna indians. Among them, about 1 in 50 people has albinism. Albinos here are called “Moon People” because it is believed one or both of their parents stared too long at the moon during pregnancy and this lunar gazing resulted in the child being born with albinism. These Moon People are considered special in Cuna tradition, as they have the unique duty of protecting the moon from a dragon who tries to eat it during a lunar eclipse. During such events, only Cuna with albinism are allowed to venture outside and shoot arrows at the moon, specifically meant to slay the dragon.

Albinos don't get such reverence in American culture. The only positive portrayal of an albinistic person in film is a 1995 movie called POWDER, which portrays a socially alienated pallid boy with mystical powers. While I've never seen this movie and thus cannot comment on its handling of a character with albinism, the film did usher in a new era of strangers calling me “Powder” instead of “Grandpa.” Through college, it happened so often it became triggering to the point where being called “Powder” was like my own personal N word.

Most albinistic people in American pop culture are portrayed as evil. In the first LETHAL WEAPON, Gary Busey plays a person with albinism, which is pretty offensive for a number of reasons and makes about as much sense as when Tom Cruise played THE LAST SAMURAI. Busey's character, like the albino twins in THE MATRIX RELOADED, is a ruthless assassin. The problem is, no person with albinism could ever be a successful assassin because we're too fucking blind. As you'll read about in this blog, my vision is so bad they wouldn't let me volunteer for the Army, so the notion of a hitman with albinism is about as plausible as dinosaurs being reverse engineered from DNA in fossilized mosquitos only to run amuck in an amusement park. In THE HEAT, a movie which was praised for its feminism, a leading DEA official is a person with normal pigment playing a person with albinism. Not only could a person with albinism never hold this law enforcement position because of our low vision, but the character, who is explicitly identified as having albinism, is mocked and ridiculed for his albinistic appearance. Evidently, in contemporary America, you can't make fun of a person for their gender, sexual orientation, race, intelligence, appearance, class, culture, political beliefs or skin color, but if he or she has albinism, their blind, pasty ass is fair game.

While albinism only occurs in 1 in 20,000 Americans, it's not what anybody talks about when they talk about diversity. Nobody sees my blindness as a real disability and my skin color isn't seen as diverse, which I recognize is probably because my diversity only makes my skin whiter. As a middle class caucasian, obviously I've not faced the same systemic adversity as many people of color; however, I have faced adversity as a person without color. I know what it is to be mocked for the color of my skin, I know how it feels to be belittled for having a disability and I know how it feels to have the vast majority of people not really acknowledge or care about either because at the end of the day, to many, I'm just a white guy, like everybody else.

In H.G. Wells' “The Invisible Man” a scientist is able to become invisible using his own discoveries, but only because he already lacks natural pigmentation. In other words, his albinistic characteristics help him become invisible. In many ways, this is how I feel as a 36 year old American with Albinism: invisible. But rather than rampage through the city like Wells' evil albino character Griffin, I'm just gonna write a snarky blog about my experiences. Hopefully I won't say anything too inappropriate; though, in the event I do, I plan to blame any off-color remarks on my albinism.

Read on about how I learned to drive: Driver/Driver

The White Elephant in the Room

We lie to kids. Like, all the time. We lie about Santa Claus, we lie about The Tooth Fairy, we lie about employment possibilities in an increasingly difficult information economy. Probably the biggest lie we tell our kids is when we say it doesn't matter what other people think of them. This is a ridiculous fabrication and it's amazing anybody can say it with a straight face. We ought to be more forthright with youngsters. The truth is, you have to interact with people everyday. What other people think of you is an integral part of socialized society, whether we want to admit it or not. So, I'll admit it. My identity is comprised of not only how I see myself but how others see me as well. Unfortunately, as a person who is legally blind, I will quite literally never see myself the same way other people see me. So, when I look at my relationship to my albinism, it's no surprise things are out of focus.

I'm white, I'm just not white like you. I identify as a person with albinism, but I don't announce it and I sometimes get very angry when other people call attention to it, especially if they do so in a derogatory way. If my identity were a pie chart, I wouldn't know how large a slice of the pie my albinism would represent. I don't fully recognize its impact on my life. This is partly because I don't know what my albinism means to other people. Some people are fascinated by me, others revolted, others afraid, others curious and others have never heard of albinism before and just think I need to get a tan. To some, it's but a small aspect of my identity, to a few, it's probably all they see. Then there are some people who just think I'm from Norway or a senior citizen.

If you asked my friends from high school to list ten things about me, I doubt very much any of them would mention my albinism. These people were at one point like siblings to me. If you asked my graduate school friends to do the same, my albinism would be at or near the top of every one of their lists of my attributes. These people were at one point like siblings to me. These groups were both extremely close to me, yet my albinism means completely different things to each of them. When we met and the nature and duration of our interactions probably shape this difference of opinion, but this same extreme dichotomy exists with my parents.

My Mom never wanted to cut the umbilical chord so my Dad felt he had to act like it was never there in the first place. To Mom, my albinism was Everything. She'd never admit it to herself or me, but she views my albinism as a failure on her part. It's an ugly reflection of her shortcomings, having a genetically inferior child. In terms of its impact on my life and implications for how hard the world would be for me, Mom considered my albinism to be the Biggest Problem in the Fucking Universe. Standing on the opposite shore, Dad has made mention of my albinism once in my entire 36 year life. I was ten. He asked “Does anyone ever give you a hard time because you're, you know, albino or whatever?” The silence was excruciating. I just stared straight out the windshield at the rolling black asphalt and said, “Nope.” But, in every moment prior to this one car exchange, and in every moment since, Dad hasn't brought it up once. I'm pretty sure he thinks I couldn't play sports seriously because I'm 5'11” and stocky. I don't think he really appreciates how poor my eyesight is, or how sensitive my skin is to sunburn, or how often I'm still, even at 36, given a hard time because I'm 'albino or whatever.”

To put it succinctly, I have no idea what my relationship is to my own albinism. And that's why I started this project. I've thought myself a writer for the better part of 18 years; yet, I've never really written about my albinism. I'm sure this is a conversation for me and my therapists. It will also be the subject of this blog. Put even more succinctly, I'm looking for a little clarity, which could prove difficult since my eyes don't focus at the same time.

Further Reading:

What is Albinism?