The Blind Feeding the Lame: Growing Disabled with Dad * Essay & Live RISK Performance

This essay about the very different experiences my father and I had growing disabled first appeared at Catapult last June. I performed a storytelling version for a live taping of the Risk! Podcast, which aired in December in an episode called “Quality Time.” Scroll down for the performance followed by the essay.

I republish both versions here in honor of my father, Lee Goodin, who died a year ago tomorrow. It was, however,  a year ago today that I received the call that told me he was dying. My stepmother had used his phone to call and so when I answered, I was prepared to receive birthday wishes, but instead received her no-nonsense, nurse-practitioner announcement that he was in the hospital and not coming out. So my birthday on August 18th and his deathday on August 19th are forever linked in a two-day bittersweet celebration of life.

You can read more about my dad in my personal obituary for him and get a taste of his writing in this post that includes three of his many letters to the editor published in the San Francisco Chronicle. But for now, please indulge my need to tell you about our respective disabilities and the joy of sharing delicious food and booze no matter the obstacles…

Performance

Photo of Leona Godin on the large Bluebird Theater stage taken from the balcony. She stands alone with a mic and her cane, Moses, wearing black and sunglasses.

Essay

Now my dad is disabled. The military man, the world traveler, is in a wheelchair. A degenerative neurological disease has turned his feet into blocks, his hands into mittens. But we still can drink together, his blind daughter finding herself singularly helpful in these new circumstances. In his kitchen, where his wheelchair cannot fit, I slosh Beefeater into glasses, and, with directions called out from the dining room, I locate the pâté, the crackers, the Dijon mustard, the knife, and return to the table, not realizing that a strange moment of intimacy, such as we’d never shared before and will likely never again, is about to take place.

*

I barely knew my father from the time I was three, when my parents got separated and then divorced, until I was nineteen and surprised us both with a visit.

While I grew up in San Francisco with my mother, he was stationed in Thailand, Turkey, Italy and Germany. I saw him twice during those years. I believe the first time was when he and my mother signed their divorce papers, perhaps I was five, and we took a ferry ride in the rain to Sausalito. We went into a glassblower shop and that luminous fire magic took my breath away. He bought me a glass Cable Car and a bird. My mother drove him to the airport and I have a memory of waving to him until he disappeared. Immediately I crumpled to the floor, and I remember the feel of that Ford’s floor and the look of the child weeping as if I could be the protagonist and spectator both.

The next and last time I saw him as a child, I was nine. My grandmother died and he returned to San Francisco for the funeral with his new wife. Not long after that, I started losing eyesight. It was just the beginnings of the eye disease that would eventually make me blind. For decades after diagnosis, I was visually impaired, and it was as a visually impaired person that I met my father again, after several years of dwindling correspondence had resulted in us finally losing touch.

*

The night before we were to set out with our giant backpacks for a three month Euro-Trek, my best friend called to tell me that she had fallen off the wall at Ocean Beach. She’d been drinking a farewell bottle of cheap wine with her boyfriend when her hat blew off. Reaching for it, she’d slipped. “I hurt my knee,” she told me and said that it wouldn’t change a thing. It turned out she had torn a ligament, and that fact changed everything.

At that time in the early nineties, plane tickets to Frankfurt were among the cheapest, which is how we ended up flying into the city next to the town of Wiesbaden, where my father was stationed. Upon arriving in Frankfurt with my crippled best friend, in the early morning hours, with the lurid airport porn shops and bar that served us, the foreignness was overwhelming. They’d given me a wheelchair to push her and our packs around, but once we left the airport, how I’d get her anywhere came crashing down. I decided finding the bus to the Wiesbaden military hotel was the only viable option.

For the next two days, my best friend did nothing but lie in bed and moan. Once I tried to go out by myself but it was a disaster. My low vision made it impossible to carry out any plans, as I couldn’t read street signs or bus numbers or maps–this was long before GPS and iPhones helped to level the playing field for visually-impaired travelers. Although I’d had no intention of contacting my father, and probably wouldn’t have if my best friend hadn’t been out of commission, I’d agreed to take his number.

If large black letters were set on a small expanse of nothing–a 4X6 index card for example–I could still read using my peripheral vision. With a cigarette in one hand and trembling fingers, I dialed the number. I listened to the foreign ringing until the voice, somehow still unmistakable as my dad, picked up, and I said, “Hi Dad, It’s me.”

“Oh hello.” He may have even said, “Hi kiddo, what’s up?” Apparently unruffled.

I said, “I’m in your neighborhood and thought I’d give you a call.”

“What neighborhood?”

“I’m in Wiesbaden.”

He asked if I had plans for the evening. I looked over at my best friend prone on her little twin bed, and said that I was pretty open.

A year or two ago, after my dad was put in the wheelchair but before his chronic infections had progressed to where they are now, during one of our pleasant “liquid lunches,” I asked him if he’d had forewarning about my arrival from my aunt and uncle. It had suddenly occurred to me, after all these years, that his nonchalance could have been attributed to them mentioning my trip to Europe. He assured me that he had had no idea that I was coming, but that being career military primed him on being prepared to deal with unforeseen events.

On our first father daughter date, we went for dinner, which was a miracle of conviviality. We smoked and drank wine and talked as if no years had passed, no childhood lost. We held hands in the misty streets and he kissed me goodnight. Such is the strangeness of the human psyche, that the exhilarated bounding I did down the enormous, crystal-dripping hallway of the hotel built for international delegations–at that late hour empty but for me in my exuberance of finding a father–sits in my heart alongside one or two of the most romantic moments of my life.

*

After my dad and his wife retired, they moved back to the states, first to a tiny town in California’s Gold Country, where he became mayor, and then to his native San Francisco, where he still lives. As I turned from a visually impaired person into a blind person, my dad metamorphosed from an able-bodied person into a disabled person. The neuropathy progressed from the soles of his feet up to his knees, and from the tips of his fingers halfway up his arms, leaving him without sensation. When he stopped being able to feel the pedals of his Jeep, he had to give up driving. His wife continued to work as a nurse practitioner. She still works and goes to the theater and travels, while he has degenerated into helplessness.

They’d been accustomed to go on grand vacations for over thirty years–to more than a hundred countries and to all seven continents, and now she does these trips by herself. Putting my dad in what he calls “my kennel”–a small group home for elderly people in Pacifica.

It saddens me that for several years, my dad has spent his days sitting in his wheelchair, afraid to venture out alone, reading the newspaper and watching Netflix, all day while she’s at work. On more than one drunken occasion, he told me, “If I thought I could manage it, I’d shoot myself in the head.”

*

Nearly 1 in five Americans have a disability, and the vast majority are older people, according to the U.S. Census. When I was visually impaired, I never thought of myself as disabled–the very idea of it would have been insulting. As I’ve aged into my disability, both in terms of acuteness and familiarity, I’m proud of being a marginalized group on the rise. Proclamations of non-discrimination pertaining to diversity still do not often include disability, but that is slowly changing. Unfortunately my dad is of the wrong generation to benefit from this change. I hope to live to see it blossom.

Disability is the one variety of diversity that can strike anybody at any time, so why not prepare people to embrace it as difference rather than affliction? This shift in attitude will likely benefit you. At the very least, it may help you cope with your end of life disabilities, or those of your loved ones.

Having started on my road to disability at a young age, I feel strangely equipped to deal with what’s to come. In his 1911 essay “The Handicapped,” Randolph Bourne insists on the benefits of growing up and into oneself and one’s (dis)abilities:

When he [the handicapped man] has grown up, he will find that people of his own age and experience are willing to make those large allowances for what is out of the ordinary which were impossible to his younger friends, and that grown-up people touch each other on planes other than the purely superficial. … He will have built up his world, and have sifted out the things that are not going to concern him, and participation in which will only serve to vex and harass him. He may well come to count his deformity even as a blessing, for it has made impossible to him at last many things in the pursuit of which he would only fritter away his time and dissipate his interest. He must not think of “resigning himself to his fate”; above all he must insist on his own personality.

Even after more than a hundred years have passed since Bourne’s essay appeared anonymously in The Atlantic Monthly, it seems to me that we have yet some growing up to do. When will we finally recognize ourselves as precariously able-bodied, tending towards disabled, instead of constantly comparing ourselves to some mythical potent youth?

*

Last night my dad called to tell me that he’d made his decision. For almost a year he’d been facing the choice to either cut off the feet that keep getting terrible infections from wounds that do not heal because of his lack of feeling down there, or continue to get infections that will hasten his death. He reminded me that when we’d first had this discussion, I said to him, “The choice seems to be your feet or your life.”

It had struck me as obvious. But he’s resisted all these months, and yesterday brought finality. “I’m saving my feet and sacrificing me.”

Although the choice has been complicated by his weak heart that might not survive the amputation surgeries, it has always been more than loss of life that frightens him, I think. He prefers to die whole and intact. The idea of being footless would irrevocably launch him into the land of the disabled.

“No heroics,” his wife had told me last week, I think to prepare me. “He’ll go home and get what’s called palliative care.”

I was meant to understand that route was terminal. My dad confirmed it in a subsequent conversation.

“When do you go home?” I asked.

“Maybe a week, maybe a month,” he told me, “but don’t get your hopes up. It doesn’t look favorable. Don’t dwell on it.”

Between his nurse practitioner wife and his no-nonsense attitude all the conversations in the past weeks that touch upon his death, up to and including last night’s, have been singularly devoid of tears. It feels strange even to write about this finality with no surface emotion. I know that the loss of my dad will be painful, but I also know that he’s not been living the life he loves for a long time, and that the ground has been laid for all of us to let him go. Besides being world travelers, my dad and his wife had been avid skiers, avid theater goers, avid devotees of the good life, and I had, through many transcontinental cocktail conversations and on my bi-yearly visits, enjoyed that with him. I will miss our liquid lunches and our drunken conversations, but I know that he is already missing so much more.

*

I place the pâté, mustard, breadsticks, prosciutto, crackers, a knife, a plate, and lots of napkins on the table, my dad directing my movements. “There, yes, put it there. Open that prosciutto.”

He had once been a wonderful cook–the sort that took pleasure in serving up multi-course meals for ten or twelve intimates–and so this fumbling with food in front of him provokes more than a little self-consciousness. I do my best with the butter knife to slice the thick Trader Joe’s plastic, muttering a narration of my efforts, though he can see my progress perfectly well. I finally get a hole in it and rip the rest. “Now what?”

He informs me that the prosciutto must be wrapped around the breadsticks, like flesh over bone, and we get to work.

“Ah, shit” he says, and I hear a delicate snap. These are dainty breadsticks, no thicker than my pinky. Without feeling in his hands, all digital movements must be guided by sight alone with no tactile input. Hence, it’s awfully easy not to know one’s strength in the way of breadsticks and crackers.

I on the other hand complement this lack with my tactile-heavy relationship with the world. I ask if I can make him one, and he agrees.

I take a thin breadstick and a thin slice of prosciutto and dexterously roll it up. It is much easier than rolling joints or burritos. I hand it to my dad who smacks his lips. Then I make one for myself and I smack my lips. We continue for a few rounds.

I ask what the plan is for the pâté, and he instructs me to take a cracker, spread pâté on it and top it with Dijon. I do this and try to hand it to him. But, not being able to see, I cannot put it in his fingers, and not being able to feel, he cannot grab it without cracking it in two, so after a few frustrating attempts, and much pâté lost in the effort, we hit upon the expediency of me holding the cracker in the direction of his face, whereupon he grasps my wrist and shoves the cracker (and sometimes my fingers) into his mouth.

We do this over and over and the gin helps us forget the unsanitary way in which I grip the knife and thrust it first into the pâté  and then into the mustard and sort of push lopsided toppings back onto the crackers with my fingers, which, nine times out of ten end up in contact with my dad’s mouth. And each time he grunts his approval in a closed-mouth yum-yum kind of way, I know I will never forget the way he let me help him –at least for a few minutes–enjoy one of his last tastes of the good life.

My Pitch Video and Application for the Holman Prize for Blind Ambition 2018

I learned about the Holman Prize from my Friend Laurie Rubin last year, but did not have the time, nor a clear project to pitch, but this year I was ready and waiting!

I managed to talk Alabaster into being my videographer, and we learned so much in the filming and editing of this little video, that I’m pleased to leak the possibility of some Alabaster Rhumb music videos coming soon… Speaking of Alabaster’s music, it is his song “Bird in a Tree,” that plays in the background of my Holman Pitch video, sped up and with a French horn taking the vocal line.

I also enlisted my long-time film collaborator, David Lowe, to help with the audio described intro sequence, but he went far beyond the call of duty by adding magic to our final cut, including somehow making our rather uninspired hill appear truly golden!

And without further delay, I urge you to watch, and like (the social media winner is guaranteed a spot in the final round of the competition), our 90-second Holman pitch video:

 

What is the Holman Prize?

The Holman Prize is the amazing brainchild of Lighthouse for the Blind and Visually Impaired in San Francisco, which was coincidentally the first blind organization I ever had anything to do with, as I grew up and started losing my vision in that city. For a little more on those early days of visual impairment, check out In the Beginning Were the Eye Doctors.

In fact, I even volunteered one summer at their Enchanted Hills Camp, which was partially destroyed in the recent California wildfires, so please consider a donation to that worthy summer camp for blind and visually impaired children and adults.

Last year was the first of this annual international competition, which awards up to $25,000 to each of three blind or visually impaired winners to help them make their dream projects come true. Here’s a short video about the 2017 winners:

The pitch video is the main component of the first round of the Holman Prize competition, which also includes a written application with short answers that helps to give context to the video, and introduce the candidate and her project.

So I thought I’d include some of my application answers here, just in case you also would like to have my pitch video contextualized!

Enter the basics of your project and give us any details that aren’t in your video pitch. Max 200 words.

Aromatica Poetica is my new magazine dedicated to the arts and sciences of smell. It is not especially for blind people, but, as a blind person connected in the community, I will encourage blind and visually impaired writers. Thus, the annual writing contest is vital to this project, which seeks to offer an alternative to sight-centric writing.

With the Holman Prize, I’ll be able to publish the first issue and have a launch party. I feel confident that after that initial issue, we’ll be self-sustaining and eventually profitable. The advertising possibilities are endless: fragrance, wine, spices, sweets, coffee, tea aromatherapy…

The trip component is inspired by James Holman, and will seek out strange new smells–from flowers and wine to volcanic rock and olive oil. It will provide the fodder for the feature story for the inaugural issue of Aromatica Poetica.

In the making of this pitch video, I’ve developed a healthy appreciation of audio description. I would have liked to provide more, but 90 seconds is not very long. For you blind judges out there, please know that I’m toasting you with a lovely-smelling glass of red wine at the end, and that accessibility is always on my mind.

Tell us a little about yourself: write a short bio, tell a funny story, tell us about your passions, or do whatever you like! We want to know who you are. 150 words.

I received my PhD from NYU in 18th century English Literature, then promptly turned around and wrote and produced two plays: about Helen Keller’s time on Vaudeville, and about the sexy history of the invention of braille.

As an actor, I’ve landed a national commercial as well as other smaller gigs. As a writer, I’ve written for O Magazine, just sold a story to Playboy, and have work in many less notorious literary and commercial publications. As a publisher, I’ll be able to encourage diverse voices and aesthetics.

Smell, “the fallen angel,” as Helen Keller put it, has become a passion of mine since metamorphosing from visually impaired to blind, and I want to share that passion. Smell needs vocabulary and great writing–fiction, nonfiction, poetry. The underdog sense can expand the world of blind and sighted alike, and Aromatica Poetica is here to help!

If you plan to travel, please enter those locations in a simple list.

France (Paris, Bordeaux, Grasse), Italy (Florence, Sicily/Mount Aetna), Greece (Athens), Bulgaria (Kazanlak/Valley of the Roses), Turkey (Istanbul).

Please tell about your visual impairment (100 words).

I have a cone rod dystrophy that started when I was ten, which has, very slowly, pushed me along the sight/blindness spectrum from normal sight to near complete blindness. Most of my life was spent as a visually impaired person, but in the past few years–perhaps 5 or six, I have considered myself a blind person, as I have no usable vision. These days, I can see an occasional chink of actual light in my far periphery, but other than that, it’s all kinds of pixelated snow fuzz with occasional hallucinations, courtesy Charles Bonnet Syndrome.

Ok, that’s it! What do you think? Before you decide, I suppose I should invite you to check out my competition

Cheers to all the blind ambition in the world!

I Have A Fellow Feeling For Trump. He Seems As Blind As I Am, Essay 27 of #52essays2017

Helen Keller startled vaudeville audiences from 1920 to 1924 with her lefty politics. According to Dorothy Herrmann’s biography, Keller’s answers to current events questions from the audience such as “What do you think of President Harding?” had planned zingers such as “I have a fellow feeling for him. He seems as blind as I am.” For my title, I take the liberty of substituting Trump for Harding, who was arguably one of our worst presidents, although he was popular at the time–his corruption being not fully revealed until after his mid-term death.

When Keller and I use “blind” to describe a man undeserving of power and ignorant of the common good–Trump or Harding–we mean, “I’d rather have no sight than no sense.”

Because Keller named, according to Herrmann, Eugene Debs (who ran for president on the Socialist Party ticket five times) as her “favorite hero in real life,” I feel confident in saying she would have supported Bernie Sanders, but, as a suffragette, I believe she would have rallied behind Hillary Clinton, and I think it’s safe to assume that she would have been pretty freaked out by the idea of Trump running, let alone winning, the presidency.

Besides the fact that she was one of the founding members of the NAACP, and an advocate for people with disabilities, she was very outspoken about workers’ rights and often linked the blind greed of capitalism to the ills of the common man.

“Amazing that hands which produce nothing should be exalted and jeweled with authority!” she writes in the first essay in her 1913 collection Out of the Dark, and continues:

“Is it not unjust that the hands of the world are not subject to the will of the workers, but are driven by the blind force of Necessity to obey the will of the few? And who are these few? They are themselves the slaves of the Market and the victims of Necessity.”

I would argue that Trumps blindness, and the blindness he infects others with, is fundamentally a capitalist one. He is unable to see beyond his own needs and accomplishments. In other words, his point of view is restricted by ego and greed, which leads him to outrageous and offensive statements.

During his debacle with the Khan family, Trump was accused of sacrificing “nothing and no one,” to which he responded ludicrously, “I think I’ve made a lot of sacrifices. I work very, very hard. I’ve created thousands and thousands of jobs, tens of thousands of jobs, built great structures. I’ve had tremendous success. I think I’ve done a lot.”

This stubborn assertion that working hard to line one’s own coffers is somehow equivalent to sacrifice, exemplifies his unwillingness or inability to see beyond himself. When he says avoiding paying taxes is “smart,” I believe he knows he’s being caddy and playing to the soundbite hungry, but when he, seemingly in all earnestness, confuses “building great structures” with sacrificing one’s life or losing one’s child, we are looking at a very profound blindness indeed.

*A draft of this essay was originally written in October 2016, before the election. It was never published. The recent horror in Nevada caused me to dig up all my old Trump writings. I offer it as #27 of #52essays2017. For more Trump fun, read my essay on Machiavelli HERE*

“She Doesn’t Look Blind to Me” The Blind Actor Phenomenon, #52essays2017

In my last essay inspired by attending the NYC Disability Pride Parade, I presented a small rant on the dearth of actors with disabilities representing themselves on television. And I got to thinking about how, in a troubling landscape, I can say with as few sour grapes as possible, that the blind actor is pretty much non-existent, excepting of course in a certain Vanda commercial starring me!

Blindness is a very weird disability since, without the accoutrements of white cane or guide dog, it doesn’t look like much, which is why, I suppose, I receive comments on the Vanda iSpot page doubting my authenticity. Here’s an example from George:

“Doesn’t look blind to me. Her eyes are following the action. She at least has some vision.”

And another from Rhonda:

“This is an actor!!! They need real blind people. They stopped this one with the actor woman. Now they have an Afganastan [sic] vet.”

For some reason, Ronda believes in the vet, but not me, the assumption is that the vet is a real blind person, which in fact he is. Mike and I shot our commercials at the same time and chatted during lunch once. But why getting blinded in war is more credible than having an eye disease remains a mystery.

I am not alone in being denied authenticity. On Molly’s Dove Shower Foam iSpot page, I read a comment from Roseanne:

“don’t think she’s blind”

And another from Carol:

“Same she doesn’t look hummm noract like any actual blind person I know and I have friends and family blind from infancy to loss of sight from wound in war to elderly! And lost sight even to being diabedic [sic]. She doesn’t appear to act in any way as they do”

Spelling mistakes and typos aside, I accept these comments as representative of a certain percentage of the American sighted population. Happily for Molly (and human kind), there are others who believe. Someone took the time to Google her and discovered her authenticity. From Shelley:

“I googled it and I think her name is Molly Burke and she has retinitis pigmentosis [pigmentosa]. You gradually lose your eye sight when you have that. My grandma had it along with two of her sisters. She was declared blind in 1967 but didn’t completely lose all her sight until 10 or so years later.”

Indeed Molly Burke is authentic and has a popular YouTube channel in which she talks about life with blindness.

I wonder if others in the disabled world get victimized by such able-bodied scrutiny. Probably. And yet there are disabilities that are hard to fake. No one doubts that Peter Dinklage, who plays Tyrion Lannister in Game of Thrones, is the real deal.

Part of the problem is that able-bodied actors have been portraying and often winning Academy Awards for their performances of disabilities for so long that seeing someone who is actually disabled defying stereotypes–not looking blind, for example–that when they see the real thing, they doubt the authenticity and somehow feel duped. It’s odd that people cannot imagine a real blind actor, but only real blind people, as if actors were not also people.

For my Celebrating People With Disabilities in Film and Television article I wrote for NYFA earlier this month, I was delighted to find enough actors with disabilities that I could not fit them all into my space limitations. However, beyond the TV ads, I had to stretch for a blind actor.

 

Kitty McGeever starred in the long-running “Emmerdale,” but sadly died age 48 as a result of many health issues. McGeever was the first blind actor to star in a British soap. Having trained at RADA, she lost her sight at the age of 33, shortly before winning her role on “Emmerdale.” She described her character as “naughty” and “manipulative in the extreme” to the BBC, and added, Lizzy “uses her disability to her advantage and then disregards it to her advantage whenever and whichever way she chooses.

 

There’s also a young French actor Melchior Derouet, who starred opposite Natalie Portman in Paris Je T’aime. Here’s a fun Hollywood Reporter article about him navigating Cannes.

When I was called to audition for the part of Reba on NBC’s Hannibal, I dreamed of not just the stardom and money, but the idea of doing talk shows and the like, speaking as myself to a mass audience of sighted people about my particular flavor of blindness. How delicious, I thought, and important, to offer a perspective that might not square with the usual perceptions! I also imagined insisting on the importance of having people represent themselves on TV, providing more nuanced and authentic representations, representations that have behind them, at least to some extent, experience that reaches beyond stereotypes. This is important not only regards viewers but also the immense cast and crews on a television or film set.

The director of the Vanda ads, Malcolm Venville, told me on our first day of shooting that how I moved was so interesting. That it was so different from how a sighted person moved, and yet subtle and not what you see in the media–not superhuman and not slapstick. The cast and crew’s experience of a blind actor can only help to explode stigmatic portrayals. There is hardly a mainstream blind actor working today, and yet the portrayal of blindness is practically a staple on the TV series, where main characters are struck blind at alarming rates, usually just before jumping the shark–yes, I’ve got Fonzie’s Blindness in mind.

But things they are a changing, and I’m excited for the blind kids coming up. Soon, I hope, it will be as frowned upon to have a blind character played by a sighted as to run around in blackface. But for now, we must be satisfied with pharmaceutical ads and training videos… Below you can watch my friend George Ashiotis and I tell poll workers how to treat people who are blind!

 

*This is #23 of #52essays2017. Check out #22 Disability Pride Parades Matter 2, about my happy march up Broadway flying my freak flag with thousands of others!*

Disability Pride Parades Matter II: people with disabilities are the most unrepresented minority in Hollywood, #22 of #52essays2017

Last year I wrote about why Disability Pride Parades Matter, from a bookish perspective since I unfortunately did not make it to the parade. This year, I did make it and was very pleased to run into friends including my old pals from Lighthouse Guild Music School! They may never forgive me for flubbing my chance to distinguish the Lighthouse from amongst the hundreds of other disabilities organizations in my impromptu loudspeaker announcement, but perhaps this video mitigates somewhat. Anyway, please excuse my excitable camera guy, who got a little nervous when I took the mic–he’s a much better singer composer!)

As an actor and writer for New York Film Academy, I’m acutely aware of the challenges actors with disabilities face. So it was exciting for me and many others to have Micah Fowler of the current hit TV show “Speechless” grand marshal this year’s Disability Pride Parade.

Born with cerebral palsy, Fowler started acting when he was five. In a Vulture interview Fowler said, “I think it is sad that less than 2 percent of actors on screen are themselves actually disabled. Growing up a huge television and movie fan, I couldn’t help but notice the lack of representation of both disabled actors and disabled characters being portrayed on television. So I am so very excited that “Speechless,” a prime-time network-television show, conquers both of those missing links by having both an actor actually living with cerebral palsy as a main character and by having a “character” in the story line living with a disability.”

Although Fowler and other young actors with disabilities such as Lauren Potter who played Becky Jackson on Fox’s hit show “Glee” and Jamie Brewer who played several recurring roles on “American Horror Story,” including Nan in “Coven,” who both have Down Syndrome, offer viewers the glimmer of a new trend of hiring actors with disabilities, things are still pretty dismal.

According to a Variety article informed by a 2016 study released by Ruderman White Paper, “95% of characters with disabilities in top 10 TV shows are played by able-bodied actors,”

The study was commissioned by the Ruderman Family Foundation and took a comprehensive look at employment of actors with disabilities in television, and reveals that “people with disabilities are the most unrepresented minority in Hollywood.”

In all of this, there is a need for activism and a push for hiring practices to shift, but there are also things disabled people can do for themselves by themselves. A good example is marching in disability pride parades, because they bring bunches of disabilities into the public eye.

I could have wished that there were a few more people along the parade route yesterday, but there were a whole lot of people marching, and it felt good, though, I believe it was a little lacking in spectacle–a few too many matching t-shirts, if you ask me. I think we need to rip a page off the gay pride parade handbook. We need costumes and we need floats! I have big plans for a braille dress next year! But of course, Gay Pride has got a few decades on us.

Daryl Mitchell, who stars in NCIS New Orleans, was an established actor before a 2001 motorcycle accident left him paralyzed from the waist down. With support from friends, including Denzel Washington and Chris Tucker, he has continued his career and now stars in “NCIS: New Orleans.” He is an advocate for employing actors with disabilities. In an Ability Magazine interview Mitchell says, “You meet with these Labor Department guys, and you can tell everybody is enthused and ready to go. That’s the main thing, really. Their willingness to fly out from Washington and see us in Los Angeles and speak with us says a lot about them. But it’s really a matter of what we need to do, what we’re willing to do as people with disabilities. We need to be more boisterous. We need to let the world know that we’re here.”

So here’s to boisterous disabled people, costumed and bejeweled, marching in the Disability Pride Parade 2018!

*This is #22 of #52essays2017. Read #21 Bobst Library, the Education of the Blind, and the Buffoon of Saint-Ovide in which I wax nostalgic about my NYU library adventures and another kind of spectacle!*

Hannibal: From Acting to Aromatics, essay 4 of #52essays2017

Two winters ago, I got a call from my agent in LA to tape an audition for
Hannibal, and it led me on a journey from stars in my eyes to a brand-new appreciation of smell.

I was, as an actor, thoroughly green. I did not even know that for TV/film auditions you sit or stand still with the camera in your face and speak the lines with all the emotions your head can muster. You must have your lines memorized or virtually memorized. If you can see, you can bring in your sides and glance at them if necessary, but if you are blind, like me, you cannot rely on this visual blankie.

Speaking of blankies, I did not know that props are generally pooh-poohed, because I’d not yet read Marci Phillips helpful book The Present Actor until after the fact and learned that:

“Whatever people normally carry around with them is usually regarded as acceptable. A cellphone, iPod, blackberry, bottle of water, briefcase, bag, magazine, pad, pen, jacket, etc. are all fair game…. If you’re eating in a scene and you choose to bring actual food into your audition, make sure that you’ve given this a few trial runs at home first.”

I did not bring actual food into my audition coaching session but rather an eraser on a plate, which I mimicked eating like it, were pie with an actual fork.

It is difficult to say how terrible my self-tape audition would have been if my agent had not found me a professional coach with whom I could work for an hour (and film the self-tape) on the Sunday before the Monday when the tape was due. For those non-actors out there, I was lucky to get a couple extra days to memorize and rehearse because the call came on a Thursday night. As gently as possible the coach, Jonathan Hammond, took my eraser-plate away from me and told me that props came across as a little bit amateur.

I had received two scenes and both were familiar because I’d seen/heard the film Red Dragon many times, and read the novel at least twice when I received the call to audition. Reba McClane is one of the best blind characters ever to grace a novel, let alone a screen. Reba was created as a round and nuanced blind character–a rare and precious thing–by Thomas Harris in Red Dragon, the first of the Hannibal series, from which the films and then the TV series developed. Hence, I admit I was pretty excited and honored to be asked to audition. I tried not to think about how awesome a job Emily Watson did in the role.

The first scene I’d been given was the scene where Reba invites Francis Dolarhyde into her home, offers him pie, and tries to draw him out. It was different from the film. Reba’s memory of a cougar at the zoo reverted back to the original llama of the novel, but in each incarnation, the scene has a quirky charm driven by Reba’s rambling.

The second scene for my audition was totally different, scary. Dolarhyde has Reba tied up and she tries to understand his anger. Having done a little bit of theatre, I embarked on my home rehearsals by clinging and pleading melodramatically. Thankfully, Alabaster–who was helping me memorize my lines–told me to sit down and act tied up.

With rehearsals through the weekend about every couple hours, I had gotten it pretty good, but my real nervousness combined with the fact that Jonathan was a pro, took this scene to a level that gave me great insight into acting, and made me realize (once again) that I do not have the stomach for it.

Jonathan told me that the one who got the part would be the one who breaks the casting director’s heart. That was a revelation. I did it with him the second time to such an extent that I had to keep myself from crying after we were done. Alabaster had walked in and was like “wow.” It was so intense; I still remember the feeling of my heart pounding and the need to sob with wonder and amazement. I get why actors are fucked up. Feeling that intense for no reason does not feel any different than feeling that intense for personal reasons–the heartrate still skyrockets, and the body says fear or love or whatever. When it was over, I was confused. I’d never felt that intensely for something that was not a product of my own rumpled psyche. I suppose one taps into one’s own psyche to get there, but still, it was strange to feel that intensity while “acting”.

I can’t say that the taped third try was as good as that second one of memory, but for an untrained actor, I was proud to have pulled it off. In my own mind, I was working very hard to send a tape to my agent that was good enough for her to pass on to the casting director and not dump me. Just good enough to impress her. the idea of actually getting a part in one of NBC’s hottest dramas was impossible, though it’s hard after it’s all done to not have some stars in your eyes, and since I sent off my two scenes in the week before Christmas, I had three weeks to contemplate how the experience would change my life.

Poor Alabaster had to watch (and describe) the entire first season and part of the second of the horrifically graphic Hannibal. (The mushroom-feeding episode is one neither of us will ever forget.)

Also in those three weeks, I started thinking about and researching on-camera classes and found a super little school called MN Acting Studio. I read Matt Newton’s book and signed up for an on-camera class with Joseph starting the end of January.

And, I’m not sure exactly how it happened, but this was also the time that started me Googling DIY beauty. I think it was that I thought if I had another audition, I should probably do a little more with the way I looked. My outfit choice for my first big audition was more about the character I knew from the books than what they were probably looking for in a supporting role–the love-interest of a starring serial killer. I don’t think I gave my makeup or hair much thought.

Cheap beauty tricks led me to DIY facials, which led me to discover essential oils. I started buying essential oils and was amazed how smells that I’d smelled before now suddenly had names.

I read the monographs–part historical, part botanical–with wonder and excitement. I calmed my heart with lavender (Lavandula angustifolia) and my allergies with German chamomile (Matricaria chamomilla). There is something quite powerful in discovering chemical constituents for fun light self-medication. The new-discovered enjoyment of naming ylang-ylang (Cananga odorata) and putting a smell to the laurel (Laurus nobilis) of Apollo’s poets and prophetesses cannot be over-estimated.

It may be that reading through all the Hannibal books for the third time primed me for my smell explorations, as Hannibal Lecter is of course a olfactory -aesthete, but whatever the reason, reading about essential oils struck a nerve. Although two years is probably not enough time to gauge such things, I feel like this exploration has changed the course of my life.

I’m not saying that I plan on setting up shop as a serial killer, but I do appreciate the fact that Hannibal recognizes the beauty and importance of the oft-neglected sense–the fallen angel, as Helen Keller puts it.

Farmacia di Santa Maria Novella fragrance bar

In Harris’s novel Hannibal, we follow our favorite serial killer into the Farmacia di Santa Maria Novella, and relish with him the olfactory symphony:

“The air was music. Here were pale tears of frankincense awaiting extraction, yellow bergamot, sandalwood, cinnamon and mimosa in concert, over the sustaining ground notes of genuine ambergris, civet, castor from the beaver, and essence of the musk deer. Dr. Lecter sometimes entertained the illusion that he could smell with his hands, his arms and cheeks, that odor suffused him. That he could smell with his face and his heart.”

I did not get the part; they decided to go with Rutina Wesley (not blind) of True Blood fame. I can’t say I was not disappointed, but I’m happy to have been asked to audition, to be a part of a new and important entertainment revolution, to have people with disabilities represent themselves onscreen.

One of the dreams I nurtured during my three weeks of waiting was to go on talk shows and educate the public about the important but still nascent trend that will shape the face of entertainment as surely as it has been changed before. Soon having anything less than a deaf actor cast in a deaf role, or a blind person cast in a blind role or a wheelchair person cast in a wheelchair part will perhaps reveal itself to be as shameful and insulting as blackface. Until then, I open my nostrils to the tears of frankincense and the shy flowers of mimosa and imagine how sweet will be the revenge!

 

*This is #4 of #52essays2017, written with all four senses and remembered sight. Check out my previous essay The Voice of the Turtle here*