The fault in my stars.

I’ve never been into astrology.

Not just because I was raised that in fell into the category of the “occult” and was not to be dabbled in, but because it made very little sense to me. At least the way it was told to me, that your life was predetermined based on your birthdate and what type of moon and stars you were born under. So everyone with the same birthday should have the same exact horoscope, the same personality type, the same predilections in love?

So many times I’ve been told “But you don’t really seem like an Aquarius,” as if the fault were with me for not living like a February baby. 

I thought of those conversations when I breezed through John Green’s lovely “The Fault In Our Stars”. That title comes from a line in the Shakespearen play “Julius Ceasar” in which Cassius says, “The fault, dear Brutus, is not in our stars, / But in ourselves, that we are underlings.”

Maybe it is my fault, being a mere underling and all.

If you haven’t read the book (or seen the movie), far be it from me to spoil it for you. I truly do recommend it. I’ve read some negative opinions online, primarily that the main characters, Hazel and Augustus, being 16 and 17, respectively speak too “grown”. I beg to differ- as a student at the now-defunct Victory Christian Academy, I, and most of the other students pretty much spoke the same way. “Dawson’s Creek” ran through our swath of Linden, NJ.

Another complaint is the way the teens darkly mock their status as cancer patients. “Why on earth would they do that?” or “Who makes fun of being sick?”.

I can answer the latter question right now- me. I mock my illness. I mock it’s impossibly long and complicated name (Chronic Inflammatory Demyelinating Polyneuropathy), and it’s abbreviated one (CIDP) that makes people mistakenly think I’ve been smoking since kindergarten (COPD). I mock the fact I managed to come down with an illness that is so rare that most doctors look at me crosseyed when I give my diagnosis. I’m special. A special little star.

The answer to the former question- seems obvious to me, but to many it’s baffling. My own husband used to bristle when I refered to myself as “handicapable” like Handiman on “In Living Color”, much to my annoyance. What he viewed as negativity was- and is- a coping mechanism. Many days, when the choice is between a sobbing, ugly cry or laughter, survival dictates the laugh. Able-bodied folks can go out for a run, hit the treadmill or the weights, and come back having burned off the stress. I can’t, so I christian myself Stumblina, which is a two-fer since I’m both vertcally challenged and prone to tripping over air.

“TFIOS” speaks much truth. How it’s like living with death on the periphery, the hassle of devices to function (prosthetics and oxygen tanks), and perhaps most discomforting, the way others perceive you. It’s odd, really, becoming more comfortablke with the idea of your death than in being in the company of most people.

Yesterday, I had my long awaited disability hearing (seriously- I first applied for Social Security in April 2012). There- under oath, I recounted for the judge and the court, just how jacked up I truly am. It was stomach churning, admitting I’m broken. 

Even worse, the judge, my lawyer, even the court reporter seemed to have a look of pity- pity– on their faces. I wrote in “I fight sins not tragedies.” of my utter disdain for pity.While I believe most people have nothing but good intentions behind those looks (and comments), they still burn. 

Over at The Atlantic, there’s an excellent post called “Disability Is Not Just A Metaphor” by Christopher Shinn. Some excerpts:

“Freaks” are having a moment.

 

The Kennedy Center’s acclaimed production of Side Show, about conjoined sisters at the circus, is rumored to be mulling a move to Broadway. The next season of American Horror Story will, similarly, be about a freak show. And in recent months there has been a proliferation of representations of disability on stage and screen. Consider just the most popular:

 

 

• The heartthrob amputee (Ansel Elgort) at the center of a teenage love story in the smash movie The Fault in Our Stars (Yup, here we go again.~ADF)
• The correctional officer with an amputation (Matt McGorry) in love with a prisoner in the Netflix hit Orange Is the New Black
• A woman with a disfiguring facial scar (Sutton Foster) on a journey to be healed in the Tony-nominated Broadway musical Violet
• The Cripple of Inishman (Daniel Radcliffe) in the acclaimed Broadway play of the same name

 

What do all these characters have in common? They are played by actors who are not disabled in real life.

 

It’s not hard to understand why: Financial realities necessitate stars in leading roles, and there aren’t many disabled actors who are big box-office draws. But even allowing that fact, something strange is going on. The entertainment world keeps producing stories about disabled people, yet almost never casts disabled performers at all—whether in major or minor roles, playing disabled or able-bodied characters. Counterexamples, like RJ Mitte in Breaking Bad or Jamie Brewer in the first and third seasons of American Horror Story, are rare.

 

…

 

The late, disabled playwright John Belluso had a theory about why actors who play disabled characters often win Oscars: It is reassuring for the audience to see an actor like Daniel Day Lewis, after so convincingly portraying disability in My Left Foot, get up from his seat in the auditorium and walk to the stage to accept his award. There is a collective “Phew” as people see it was all an illusion. Society’s fear and loathing around disability, it seems, can be magically transcended.

 

This same logic can be applied to any representation of disability by an able-bodied actor. A lot of teenagers going to see The Fault In Our Stars already knows Ansel Elgort has two full legs. Broadway audiences know from having seen them previously that Sutton Foster bears no facial scarring and Daniel Radcliffe has no physical limitations. It is obvious the conjoined sisters in Side Show are two fully separate women, and even the convincing CGI amputation in Orange Is the New Black strikes our eye in a slightly false way.

 

This is not incidental but central to the success of these representations. They provide us with the comforting assurance that we are not witnessing the actual pain and struggle of real disabled human beings; it is all make believe.

Shinn, who is disabled, in explaining the preference for able-bodied actors over disabled ones to play disabled characters (ain’t that ’bout a…”, captures how I feel when I’m with a lot of people. I make them ill-at ease. Some (many) react with pity, as forementioned, others with a subtle revulsion. The stiff-legged gait from a youngish looking women- such awkwardness belongs to the elderly. On a youngish person, it’s confusing, strange and ugly. It’s a walk of brokeness. I suspect they fear too much time with me may result in their developing cracks. 

Not too many people are comfortable with the spector of death, but decay seems to demand retreat. 

In “TFIOS”, I highlighted a number of passages, including this one:

Augustus tells Hazel, refering to the girl he had last dated, who died of brain cancer, about the pain he experienced in losing her. He says, “Grief does not change you, Hazel. It reveals you.” 

I believe that experiencing a disability, reveals a person’s character. I also believe that merely observing it, reveals so much, as well.