Ichthyosis: Stupid They May Say

When I was younger, I did not really like to participate in sports. Running often left me overheated, football was a series of painful scrapes, and horseback riding rubbed the insides of my thighs raw. I had always dreamed of fencing - even with my physical limitations. There was something in the perceived elegance of sword fighting that I could not resist. And, let's be honest, being able to use a sword was just plain awesome. In junior high, I met a boy who was part of the local fencing club. He convinced me to drop past and see what a typical evening was like. I agreed to come past that Saturday, which just happened to be the day after the fifth Harry Potter book was released. So, I hauled myself, my best friend Kylie, and Harry Potter and the Order of the Phoenix to the fencing club that Saturday morning. I fell even more in love with the sport than ever.

Eventually, my parents agreed to let me give fencing a try. When I showed up for my first lesson, the coach - a brilliant woman named Julie - took one look at me and frowned. "Are you sure you want to do this?" she asked. I assured her that I would know if I was pushing myself too far and that I would be fine. I was lying through my teeth, of course, but I did not care. I had to give it a try. The first lesson was pretty basic: How to move like a fencer. Amy, one of the few women in the club, showed me the strange, squating stance used throughout the fencing world. I sank down into it, and she was confused. Rather than standing flat on my feet, I was perched up on the balls of me feet - more like a ballet dancer than a fencer. She ordered me to be flat-footed, but it turned out to be a hopeless struggle. My skin has always made it difficult for me to even walk flat-footed, so I will often just walk up on my toes. This phenomenon is relatively common among people with EHK, some even call it the velociraptor gait. My strange fencing stance earned a lot of comment from the other fencers, and I even earned the name "Jackrabbit" for the way I would bounce around on my toes. After the lesson, Julie fixed me with her eagle eye. "So, you want to come back?" she asked. Without hesitation, I told her I would be back the next week.

Fencing presented almost more challenges than I knew how to deal with. Heat became my number one enemy, since the thick kevlar armor all but roasted me alive. I quickly developed a system of soaking the back of my jacket's neck and carrying two bottles of gatoraid to each practice, which worked well enough. During the summer, I would even sneak an ice pack under my chest protector, just to keep me extra cool. If nothing else, I became very sneaky. Another challenge was the friction. When a fencer would hit me with the tip of their weapon, sometimes it would create enough friction that my skin would simply slough off. My skin does this instead of bruising, kind of as a deflective mechanism. More often than not, I wouldn't even notice how many hits had peeled off my skin until the end of the night when I took my jacket off. Sometimes, after a particularly brutal bout, my arms would be a series of cuts - sometimes even my legs and chest falling victim to the same treatment. Competitions proved even more exciting, though, since the fencers I came against were no aware of my skins peculiarities. During a team match, one fencer hit my arm with particular vigor (by accident). I shook it off and the match resumed. For some reason, the other fencer was incredibly distracted, and I easily won the match. When I went to unhook my weapon, though, I looked down at my arm. The entire sleeve was soaked with blood. My coach and teammates rushed over to me, asking if I was alright or needed a doctor. Carefully, I stripped off my jacket and looked at the five inch gash running up my arm. "It's fine," I said. "Just a scratch." Without looking back, I walked into the bathroom, washed off my arm and the jacket, and returned to the match. Every time I went up to fence that day, my opponents treated me like I was made of glass.

Ultimately, fencing was one of the best and worst decisions I made, growing up. When I finished my three year fencing career, I was in peak physical condition and could fit into size six clothing. I had loved the challenge of it, but ... after a time I had realized it was taking up too much of my life. Forty to sixty hours a week fencing was preventing me from working on my schoolwork like I needed to, especially since I was entering my final year of high school and wanted to get into college. And, realistically, it was taking a toll on my health. The fencing equipment would need frequent cleaning, otherwise I would catch a staph infection or some other illness. If someone came to the club sick, I was the first person to catch whatever they had.

Taking on sports when you have a disability really is a fantastic challenge. If you ever look at a sport and say "I wish I could do that" I would suggest trying it. You never know what might happen or whose mind you might change.

Modern Monsters

As a Renaissance scholar, one of my areas of scholastic interest is the field of monster studies. This is an admittedly odd pursuit--it is neither in vogue or particularly well regarded--but I persist in it anyway. The other day, one of my colleagues asked why I liked monsters so much. I smiled at her and said simply, "Because I understand them."

During the sixteenth century, a man by the name of Ambroise Pare published a book called Des monstres et prodiges (or, in English, On monsters and marvels). This book represents one of the first attempts to explain birth disorders and acts as a foundation for monster studies. In it, Pare covers everything a girl with fur to a unicorn. Some of the monsters in the book are particularly difficult to believe (after all, there are very few half-ox half-human beings roaming around). Others, though, hit very close to home. After all, I have a feeling that twins would be very upset if they knew they would have been viewed as monstrous entities.

One of my favorite monsters in all of literature is Richard III (from William Shakespeare's Richard III). He is traditionally played as a heavily handicapped man, usually with a humped back and at least one gimp limb. Normally this sort of figure would be comical or dismissed, but Richard's too cool for that. Instead, he's the villain and protagonist of the play. The entire story focuses on his rise to power and subsequent fall, but he's such an awful person that it's almost impossible to call him a hero. The opening lines of the play are delivered by Richard. He is alone on stage and says,

Now is the winter of our discontent
Made glorious summer by this sun of York;
And all the clouds that lour'd upon our house
In the deep bosom of the ocean buried.
Now are our brows bound with victorious wreaths;
Our bruised arms hung up for monuments;
Our stern alarums changed to merry meetings,
Our dreadful marches to delightful measures.
Grim-visaged war hath smooth'd his wrinkled front;
And now, instead of mounting barded steeds
To fright the souls of fearful adversaries,
He capers nimbly in a lady's chamber
To the lascivious pleasing of a lute.

Basically, he's saying that the conflict between the House of Lancaster and the House of York has temporarily subsided, because his brother (the son of York) has become king. With the war put aside, Death is instead busy getting up to shenanigans, and pretty everyone is having a great time. Except Richard. He goes on to say,

But I, that am not shaped for sportive tricks,
Nor made to court an amorous looking-glass;
I, that am rudely stamp'd, and want love's majesty
To strut before a wanton ambling nymph;
I, that am curtail'd of this fair proportion,
Cheated of feature by dissembling nature,
Deformed, unfinish'd, sent before my time
Into this breathing world, scarce half made up,
And that so lamely and unfashionable
That dogs bark at me as I halt by them;
Why, I, in this weak piping time of peace,
Have no delight to pass away the time,
Unless to spy my shadow in the sun
And descant on mine own deformity:
And therefore, since I cannot prove a lover,
To entertain these fair well-spoken days,
I am determined to prove a villain
And hate the idle pleasures of these days.

Richard is bitter, because he is unloved. His deformity caused him to be outcast since "monsters" were viewed as subhuman. In revenge for this mistreatment, Richard decides to get some revenge by destroying everyone's happiness. The rest of play follows the outline of his plans--though there is a small hitch in the form of Richmond (your prototypical heroic pretty boy). I understand entirely where Richard is coming from. Nobody, not even his mother, loved him. If I were in that in position, I would probably not be a very nice person either.

Of course, I think I understand him so well because I am a monster too. I have a genetic skin disorder by the name of epidermolytic hyperkeratosis, which causes my skin to grow fast and form thick scales all over my body. (Yes, even there.) Had I been born during the Renaissance, my birth would have been the focus of a broadside. I probably would have been lauded as the Alligator Human. Oh, wait, there's a site that has an article about that: Human Marvels. Point in fact, any time up until the mid-1900s I would've had to make my living as either a beggar or a side-show freak. Or, like Richard, I could've just been a diabolical villain. Take your pick.

Sadly, it took a long time for life to get better for the "monsters" of the world. Disabilities are still taboo. Going through stores, walking the street, even just attending class--I get stared at. People whisper (thinking I'm deaf) about how offensive they find my existence. "What is a freak like that doing out in public?" "That thing has no right to live." "It better not reproduce." Yes, people have said all of those things about me and to me... and worse.

Times are changing. In 1977, America finally emancipated its disabled citizens. Congress signed the American's with Disabilities Act (ADA), and we finally had rights. But why did it take so long? Am I really that different from you? I don't think so. There's a documentary by the name of Lives Worth Living, and it tells the story of the fight to pass ADA. If you want a taste, watch this:

Watch Scaling the Capitol Steps for Disability Rights on PBS. See more from Independent Lens.

In a way, my study of monsters is studying my heritage. All of the stigma, all of the hatred, and all of the determination that come with being disabled are mine. But they belong to millions of other people, too. Through my writing and scholarship I hope to shed light on the evolution of how disabilities have been viewed. I hope that it creates conversation and understanding. I hope that it encourages people to not be afraid. Most of all, I hope to make a difference.

I am a modern monster. A mutant. An ichthyosaur. But I'm also human. Maybe you should treat me like one.