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.

“LEE GOODIN, SAN FRANCISCO” Dad’s Letters to the Editor, 2007

On the first anniversary of my father’s death, I’m grateful to my stepmother for sending me three of his letters to the editor, clipped from the San Francisco Chronicle. One of them—from August 19 , was published eleven years to the day before his death. It’s humor apparently hit the mark, as the editors used his words “erector set” to title the section. My dad was not alone in abhorring the proposed building sketches, he just said it best! This letter and the others remind me how much he changed in his last years, and how much he stayed the same.

Once, during one of our “liquid lunches”—sitting for hours drinking (and eating) in the window booth of Fior d’Italia—which we indulged in every time I visited San Francisco, he mentioned that he had an idea to put all his letters to the editor together and write a book around them. I encouraged him, but did nothing to forward the ambition. A couple years later, when he was feeling much more downcast, much more sedentary, and house-bound (except for Fior downstairs and the doctors), I asked him about the idea, and he shrugged it off as something that was no longer interesting to him, or no longer possible. I don’t know that I’ll ever be able to fulfill that particular book idea, but at least I can share his words here.

In the three letters from 2007, his interests range from the homeless to the monstrous aesthetics of a planned skyscraper to expressing his fears about a radical conservative court—a painfully prescient thought.

In these concise bits of his politics, my dad’s witty and reasonable voice talks to me from his tumultuous watery grave in San Francisco Bay, reminding me that, although in his last years he took little pleasure in the arts or travel that he’d once loved so much, he never stopped thinking about politics at the local and national levels.

To be sure, since 2016 at least, things were going in a direction that once would have made his blood boil, but at the end just kept his mental state set to a slow burn. The upshot being that his impending death seemed less dire than it might have if Trump had not soiled the White House.

My dad had his opinions till the end, even if he lost some of his fighting spirit. As you can read in my personal obituary for him, or in this essay I wrote a few months before his death. In his last years, his body made war on him, and there was not a lot of energy left for politics. Even so, his interest could not be extinguished. There was at least enough curiosity to know how bad things were going to get him out of bed every morning—despite the considerable pain—and into his wheelchair. Then he’d belly up to the dining room table, where he’d spend hours grumbling and griping over the newspaper in his endearingly grumpy way.

LETTERS TO THE EDITOR – MONDAY, JULY 9, 2007

Battle of the activist courts

Editor – August Goddard’s comparison of a “conservative activist” court with a “liberal activist” court is a typical knee- jerk reaction by those who would have us return to some dark medieval fantasy world (Letters, “The Supremes and ‘a living Constitution, ” July 6).

The liberal court always moved our country in the direction of more civil rights more freedoms. A court unlike the Bush/Cheney-appointed court that will be chipping away at those hard-won rights and freedoms for the next 20-to-30 years. I hope Goddard enjoys living under a Constitution rewritten by the extreme religious right. I shudder at the thought.

LEE GOODIN
San Francisco

LETTERS TO THE EDITOR – Sunday, August 19, 2007

An Erector Set

Editor – Regarding the Transbay Terminal high-rise proposals: Unlike John King, The Chronicle’s urban design writer, I guess I don’t understand what the neighborhood needs.”

His selection, the Rogers design, looks like the contractors forgot to remove the construction elevators-giving it an “erector set” appearance, and the thing on top looks like an apparatus in Dr. Frankenstein’s laboratory.

The other two designs look like screwdrivers and would give the city a San Diego-look—the locals call their downtown “the toolbox” because the Rogers Stirk Harbour buildings all look like chisels and screw- drivers standing point up (except one that looks like an electric shaver). At more than 1,200 feet in height, any of the proposals would become a tempting “terrorist target.”

LEE GOODIN
San Francisco

LETTERS TO THE EDITOR – Tuesday, December 25, 2007

Advocates aren’t helping

Editor – Regarding “If you want to help the homeless, just say yes,” by C.W. Nevius (Dec. 23): Once again, the Homeless Coalition and other so-called homeless advocates prove themselves to be part of the problem.

Are they professional “do-gooders” whose own means of support relies on maintaining a homeless population? Or are they amateur “feel-gooders” who are clueless as what needs to be done other than handing out blankets and passing out turkey sandwiches? Homeless and poverty have become buzzwords to cover a variety of individual situations. A family temporarily homeless because dad was “downsized” or they had catastrophic medical bills is different than the individual described in the column. He was homeless in front of a liquor store that cashed his check (for a price) and then gave him the remainder in bottles of cheap booze. In the first instance, normal social services can help the family to recover; there is an assumption that they are willing and able to be helped. In the latter case, the chronic alcoholic (who had an income) needed some “tough love”: detox, placement in one of the mayor’s full-service hotels and on-going rehab. Instead, he ended up dead. Nice going, homeless advocates.

Care Not Cash needs a big dose of tough love to get the chronic homeless off the streets and into appropriate settings to deal with their myriad problems. If it takes changes to the law in order to move them off the streets into appropriate environments, then let’s get busy on legislation that will do just that.

LEE GOODIN
San Francisco

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*

Helen & Friends @ Zuccotti Park: Occupy Wall Street 5-year anniversary

“ASK ME WHAT I THINK OF CAPITALISM” That was the sign I made and carried with me to Occupy Wall Street Sunday. We finally made it to Zuccotti Park, after the fact from the standpoint of many who think the movement of the physical place is dead. But it was exhilarating for me and my companions nonetheless.

Besides me and my sign there was:

1 Igor GuideDog (Mr. Popularity)

2 Caroline (blind friend with cane)

3 David (filmmaker with old school Lomo Kino camera that took 30 seconds of footage and 10 minutes to reload

4 Liam (latecomer/hanger on)

 

I’d agonized over the signs – regarding both form and content:

1 How to incorporate Helen’s fun Vaudeville Q & A

2 How to incorporate my show (The Star of Happiness: Helen Keller on Vaudeville?!)

3 How to engage with an unseen public

4 How to engage with other blind people–actually I’m lying this was not a concern. I just wanted to say to people “hey you wanna feel my sign”! this proved to be fun.

5 How to get the words on the poster without busting out the old spray paints and upsetting domestic odor 6 How to make letters legible to sighted people when you can’t see

On the night before our outing, time was dwindling and I’d not made the stencils I had considered. I finally hit upon using Velcro tape to make letters but let me tell you this is not so easy as it sounds especially when you can’t see what you’re doing. At about midnight, after more than one tall boy, I began to despair that I was making a sign illegible to all. I almost stopped right there but then decided that a sign that no one could read also had its charm.

I did poop out after that first sign, but it turned out to be just the right thing and just enough of a burden. Not sure how I thought I’d carry six signs in one hand and Igor in the other even with a ride from Accessalimo on one end of the journey and help from friends on the other.

“ASK ME WHAT I THINK OF CAPITALISM” seems suggestive rather than provocative, but even so the lady at the Dunkin’ Do– –No you didn’t?! –We needed coffee and turned to The Man. Sorry. –nuts was indeed provoked she said to David (who was holding my sign for a moment, “who’s going to pay taxes if nobody has a job?” David answered diplomatically that indeed he does have a job and pointed me out as being the owner and author of the offending sign. I was only vaguely aware of this exchange and could not defend my sign since I was busy fending off passes on my German Shepherd by German tourists!

Basically, we did not even get coffee down our gullets when the games began and they did not stop till we left the park. Between the dog and the sign there was really not a moments rest – Igor gave out many Guide Dog FAQs (jesus I wish he had hands) and I talked about Helen and the sign and occasionally got to answer the question – with a big Star of Happiness smile – “I think it has outgrown its usefulness.”

People wanted pictures of me and my sign, people wanted interviews with me and my sign, people wanted words of wisdom from me (it’s that poet prophet thing, I tell yuh–my people have cornered the market!), and I happily got to say many times over, “you wanna feel my sign?!”

We were there to film some footage for a newsreel promo for The Star of Happiness, and we hopefully got some, but since David was using this little old school wind up camera, which may or may not have taken a single decent frame – we won’t know till the film is developed what we got, if anything. The irony is that I neglected to get him to take even a single pic with my iPhone though I grace the iPhones of many strangers and poor David spent much of his time figuring out how to use their cameras so that they could have their picture taken with us!

Ok, fine, so half the people wanting pictures with us were from some kind of disabled action committee (God I hope our footage turns out!) And most of the other half were just plain lame, but still I felt like some kind of crazy pied piper singing out Helen’s song of socialism!

It was fun talking to people about Helen’s politics because it allowed me to hide behind her strong convictions–at least partly. Admittedly many people asked me if I too were a socialist, and finally, by the twentieth time or so, I formulated an answer that did not get people riled up. I had been saying that I’m not really political, but they gave me shit for this and rightly so I suppose. I live in a society that is to a certain extent civilized, meaning, I think, that we are circumscribed by laws that inhibit and punish our selfish and insatiable parts, and so I cannot help being political. What I meant and finally managed to articulate, is that I’m not that interested in current events. I can’t help but take the long view – studied the classics as an undergrad, got my PhD in early modern lit, and just recently started reading books written in the twentieth century.

That said, I do feel a socialist at heart. I feel kindred with Helen’s politics though I myself am not an activist. I tried to tell someone who asked me about policy that I’m an idea woman not a policy woman, but he wouldn’t except that. Well, too bad because it’s true. I think in terms of historical and psychological trends and cannot wrap my brains around the details of changing today’s policy. Rather I found myself clutching at one large thread that runs through Helen’s critique of capitalism: greed. Greed and a culture, which not only allows for but encourages that greed to get totally out of hand. I’m not exactly talking about specific people here – I don’t believe that there are obvious distinctions between the selfish and the unselfish, the greedy and the not greedy. I think these things exist on a continuum, like most everything else I can think of. The fact is that humans will be greedy, shit I had a dog that could be greedy. We all want all we can have, right? Maybe not all the time–hopefully not all the time, but sometimes, right? Probably we have all felt that insatiability that leads to a loss of control, and an indifferent attitude regarding the suffering our bottomless gullets, pockets, loins, etc. might be creating in the lives of others.

What I hit upon in my interviews and discussions yesterday was the thought that the real change that OWS can have, and I think already has had, is to make greediness just a little more out of fashion, which, to those who are greedy for change, may sound trifling but to me, sounds like the kind of change that lays the groundwork for a paradigm shift!

So I guess my answer to the question “What do you think of capitalism?” is tamer than Helen’s, but of course I am not a card-carrying socialist and I have lived well past the dream of her Soviet Utopia, and so there is some irony in my answering with her “I think it has outgrown its usefulness. Rather I think if asked at this moment what I think of capitalism, I should answer the way I would about my own out of control tendencies, “Maybe a little more structure and restraint are in order?!”

 

[First published on November 11, 2011, when hopes were high and my dear Igor GuideDog was still among the living. To learn more about Igor GuideDog and the guide dog fund I set up in his honor, CLICK HERE]

Exploding Stigma with Heidi Latsky Dance

#MeOnDisplay means exploding stigma!

Earlier this week, I received information about an open rehearsal/audition with Heidi Latsky Dance and thought it sounded fun; I haven’t danced in a while and I decided that, whether or not I’d be accepted into the performance, it would be a cool experience. I did not realize the experience would begin before I even got there…

After emailing the coordinator my headshot and resume, I visited the company’s website. I did not get very far when I encountered a link called #MeOnDisplay. I clicked on it and read:

“Every day we see people on display on magazine covers and billboards and we KNOW we are not reflected in those images. It’s time we own our truths, imperfections, and fierceness.

Join us in redefining beauty one image at a time.

Take a STAND. Take a PHOTO.

Tell the world what being On Display means to you…”

So before finding out more about the company, I injected myself into their “Social Media Revolution!”

After thinking for a moment about what photo to use–I knew I wanted to use one featuring my blind cane–I decided on “Behold my Unisphere!” a photo of me pointing at a giant metal structure of the Earth constructed for the 1964 World’s Fair in Queens, as if I were a general indicating my territory, lately conquered.

I uploaded it to Twitter, but In my excitement I’d neglected one of the directions, so @HLatskyDance urged, “@DrMLGodin loving this! To us #MeOnDisplay means taking risks. What does it mean to you?! Let us know and we’ll add it to our gallery TwoHearts emoji [I don’t know how to make emoji on my PC!]”

My first thought was to write #MeOnDisplay means reveling in difference, but then I thought that might be too flabby, or worse, that someone else had already said it or something similar–I am a little OCD about uniqueness! So I read through a few of what others had said, then did a search for difference and sure enough I found something–wasn’t mine, but it was close enough, so I thought some more…

I’ve been reading Martha Nussbaum’s book Frontiers of Justice: Disability, Nationality, Species Membership, and my ears pricked up at her use of the word stigma. Referring to work by Erving Goffman she writes that “a central feature of the operation of stigma, especially toward people with impairments and disabilities, is the denial of individuality: the entire encounter with such a person is articulated in terms of the stigmatized trait, and we come to believe that the person with the stigma is not fully or really human.”

Ouch! But I take her point as she develops it into the recognition of the age-old amazement people who do not perceive themselves as disabled have when they discover something quotidian in the behavior of one they perceived as wholly different:

When such a person performs the most normal actions of a human life, “normals” often express surprise, as if they were saying, “Fancy that! In some ways you’re just like a human being!”

Though she is not speaking specifically of blind people here, it has certainly been my experience that sighted people get excited about the dumbest things with respect to my behavior and congratulate me on things they would ordinarily reserve for children. In other words, one who is disabled often feels the impressing people bar to be rather low.

I’m the first to admit that if you are going to judge me according to whether I do a bang-up job of walking a straight line or eating politely with a fork and knife, I will likely fail. But frankly, my expectations of leaving a mark on this world have absolutely nothing to do with the quotidian. Though I sometimes feel bad about my lameness at using my blind cane, mobilitying oneself to the bodega does not a genius make.

To take an extreme case, if we judge Stephen Hawking on the basis of normalcy, he too will fail, but of course, we do not. I’m not a (physics) genius and I shudder to think of the bodily sufferings he’s gone through, but when it comes down to it, there have been countless humans birthed into this world and deathed out again, and greatness is not always measured in physical ability.

Despite my shortcomings in using him, I love my blind cane, who, you should know by now is named Moses! My boyfriend and I do not agree who awesomely dubbed him Moses, thereby conjuring powers to part the endless Red Seas of New York City, but we agree there is magic in naming a stigmatized object–the lowly government issued white cane with red stripe and reflective tape–after a biblical man of power.

A couple years back, I was lucky enough to find myself in LA on a national commercial set and it was positively charming to see how the crew, when introduced to Moses, referred to him with no small reverence, and even, in some darkly fantastic way, seemed privileged to hang with him. This is what exploding stigma means: using the mark of shame to blow up perceptions!

I’m thrilled that Heidi Latsky’s #MeOnDisplay helped me articulate a thought that’s been rattling around my head for some time.

Nietzsche and His Pain Named Dog, #52essays2017

I have given a name to my pain and call it “dog.” It is just as faithful, just as obtrusive and shameless, just as entertaining, just as clever as any other dog–and I can scold it and vent my bad mood on it, as others do with their dogs, servants, and wives. –Nietzsche, The Gay Science.

I first heard this Nietzsche quote while I was sewing–yes, I like to sew and listen to philosophy books as well as novels! It was a quote that caused me to stop my electronic reader and sew quietly for a while. Then I read it and reread it with more and more attention and finally, a poem popped out! Although it needed another month or two of embellishments and revisions, it felt complete, like it was destined to be a thing, from the very beginning.

The poem “A Pain Named Dog” is one of the few I’ve written that I keep coming back to and it seems to keep resonating. I usually tell people that I stole the central conceit from Nietzsche, and I hope that sometimes It gets people to read The Gay Science, but who knows? It’s just a book of aphorisms, so spending time with one of the aphorisms is perhaps as good as flipping through them all.

I presented it last summer at the School for Poetic Computation as a part of my lecture I called “Nietzsche in a nutshell,” and it resonated with the students who were reading works on writing disability, including Nussbaum’s great book Frontiers of Justice, which I write about more in Exploding Stigma.

In The Gay Science, written after a period of illness, Nietzsche illustrates what Nussbaum has to say about the generality of humans entering into and out of disability/dependence throughout their lives. Nietzsche makes embodiedness a central tenet of his philosophy, and pain a necessary component of that embodiedness. His relationship to pain, namely treating his pain as if it were a dog to be trained and disciplined, turns pain from a thing that he submits to into a thing that submits to him.

Perhaps then it makes sense that “A Pain Named Dog” turned out to be the first poem I read out loud in public since I’d lost the ability to read normal print around the age of twelve. For decades I was ashamed of my inability to read with my eyes, and embarrassed that I could no longer read out loud. I was really good when I was a kid.

Finally I hit upon using my little electronic reader’s earbud as a Cyrano, whispering my own words into my ear. That tiny fix made it possible for me to enter fully into a writerly life, and it was not new technology but a kind of paradigm shift in my mind about what reading was. Though I’d been listening to electronic books for decades, I somehow did not make the leap of understanding it to make possible my own presentation of words.

 

A Pain Named Dog

I have given a name to my pain

And call it Dog.

I can tell it to sit, lay down,

Roll over, play dead.

I scold it and shame it

And pretend it’s my bitch

And though it worries my carcass

And growls and shits,

It gives me a leg up. On profundity.

 

I have given a name to my beauty

And call it Snake.

I observe it wind my hand

Delicate as flowers ferocious as fangs

I tell it, PULSE DANGER.

            SWALLOW BLIND MICE.

And though its little murders do not ripple

The still-water universe

It’s all about ego. Feeling groovy.

 

I have given a name to my anger

And call it Cockroach

I fatten it with booze and candy

It waxes petty and cruel

I chase it to squash it

Curse its very existence

But because it incites war

In the bowels of men

It does me some good. Keeps them in check.

 

I have given a name to my disease

And call it Devil

Sad Devil. Mean-spirited

Jealous and cruel.

I know the Fiend called Devil

Is the Blindness called Life

Still I shout HUZZAH

With the rest.

It appeases. Why not?

 

I have given a name to my sadness

And call it God

I tell it YOU ARE DEAD.

Long live you?

I command SIT STAY ROLL OVER

            At least fucking PLAY DEAD

And though it is just as obtrusive and entertaining

Shameless as any other god,

There are others. I pray.

*First published at The Kitchen Poet and reprinted at Eunoia Review*