Report from Cripland

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An essay, "For Jessica" by Jennifer Lawler, has been circulating recently, and it is a powerful piece, full of anger, full of existential rage, full of resolve, full of love.

A writing study group of which I'm a part discussed the piece, in fact. I chose to post the link for a discussion topic, primarily because I believe the utter concentration upon the naked self needed by a writer to maintain the focus required to write such an essay is somewhere beyond difficult. 

Especially if a person was raised in a household where stoicism was declared a virtue, which isn't relevant to the theme herein but is a personal comment from the point of view of a writer.

As the author of a memoir in which disability is both protagonist and antagonist, I have reached the point where the more I've written about disability, the more I recognize, truly know there is more to say, because you don't understand this foreign terrain, because the world needs to know, that people need to comprehend, that disability is simply another color in the human rainbow, a color that almost surely will splash on your walls sooner or later. 

On the other hand, as a writer, I often find myself too bored to report from Cripland. What's new? Not much. Patronization is rampant. If people with disabilities need assistance, the government thinks it is better to warehouse them than to support assistance within the community. Medical marijuana might make things easier, but we all know marijuana is bad. Take a drink instead. And yes, we should consider assisted suicide if things get too rough. 

But that's life, really, and it is mere routine, and all that's necessary to survive is getting up each morning, stealing a little happiness somewhere, and taking a joyride through the day.

I've also come to feel that I cannot write about disability without indulging in what might appear as a plea for sympathy. Take the news items listed above. I am in no danger. Sure, my fanny rides a wheelchair, but truth told, I have it good, at least compared to many of my fellow citizens of Cripland, and surely far better than those who live under terror, famine, and assorted other evils, whether they're physically capable of running for their lives or not. Being a crip in the USA ain't no walk in the park. Being a crip in Somalia or the Sudan is, I'd guess, pretty damn close to fatal. 

But that's not what Lawler is talking about. Neither is what I want to focus on here or elsewhere as a crip who is a writer, or as I prefer to think of it, "As a writer who happens to be a crip."

I think I want to know, "Is there a consistent audience, granted not a Stephen-King-John-Grisham audience, but an audience for writing that provokes sympathy, a consistent audience for this sort of illness/injury/death experience genre?"

And that's not to say, I want sympathy. I'll settle for empathy at a level that reminds you that my reports from Cripland are fair and balanced. I don't want your pity. I want you to be interested, to learn something, to understand that your world may be broader, wider than you think.

As for tear-jerkers, I know there's an audience, even though I am not sure that disability writing should be part of it, at least in a fundamental sense. Dickens proved it with Oliver Twist. Frank McCourt proved it with Angela's Ashes. That's what makes one rumination on Lawler's writing, Rebekah Denn's piece in The Christian Science Monitor, so intriguing, especially because it ends with the question "Have you ever loved a book that had no happy ending?"

First, who is to say Lawler's book will have no happy ending? I can't. There may be some sort of spiritual resolution, and I'm not talking about physical miracles here, a Rise up, take you bed and walk moment. But there comes a time when resentment, anger, rage begins to sputter, and things become clearer, and things become less important, and even in Cripland, a citizen begins to realize that other things matter more. 

And so, I'll modify Denn's question: Have you ever loved a book that had no happy ending, and yet it didn't seem to matter?

That's the kind of reports I'm trying to send from Cripland.

Disability and Sexual Surrogacy, Part III

My previous postings on the late Mark O'Brien, a writer who used an iron lung, and his interaction with a sexual surrogate, will be amplified by Breathing Lessons, a short (approximately 30-minute) film on his life. It is available on SnagFilms.

It is mid-way in the film before O'Brien begins to discuss his loneliness, his interaction with the surrogate, and how it affected him. Even those poor at reading the non-verbalized messages underlying conversation can see that surrogacy was a less than perfect experience. 

Do I judge him harshly for his choice? No, no. I simply think neither the therapist or the surrogate understood the ramifications of the prescription. O'Brien may have wanted the experience of intimacy, but having been in both situations, I cannot see how five sessions of artificial intimacy (talk, touch, caress) ending with one session of sexual intercourse gave the man anything other than one sexual experience that worked to amplify his loneliness.

O'Brien may have received just what the doctor ordered, but from everything I see in the film, he wanted intimacy within an ongoing relationship, a thing both the physician and the therapist should have recognized -- and recognized surrogacy would not provide.

It is fascinating how important sexual/emotional intimacy is to individual humans even as we both misunderstand the complexity and duality of its nature and rationalize its value and purpose.

That such a thing of value, a thing allowing a human being to be completing human, can be restricted or denied by a disability is one of life's strange, twisted mysteries.

The Art and Craft of Book Reviewing

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Robert Burns offered a paean "To a Louse" and said ...

O would some Power the gift to give
To see ourselves as others see us!
It would from many a blunder free us ...

That's one reason I always enjoy, in a strange fashion, comparing what I write as a book review to that of a person who knows how to write and intelligent an comprehensive review. Granted, for both venues where I write reviews, I must conform to a loose formula and stick to a word count.

A few weeks ago, I reviewed An Available Man, the latest from Hilma Wolizter. It was a decent book. Literary. Yet "literary" while drawn from reality, literary constructed from the rumble of imagined grief. The theme might be loosely summed up in this sentence.

Sometimes ironic, sometimes melancholy, Edward’s reluctant “dating after death” begins with toned and hungry Karen hot to finish dinner and head home for a romp in the hay.

The writer Nancy Kline reviewed An Available Man for this week's New York Times Sunday Book Review.

Among her observations were "Wolitzer’s vision of the world, for all its sorrow, is often hilarious and always compassionate." I felt the compassion, but I surely didn't feel the hilarity but rather a wryness and ironic distant generated by the situation, but then I'm not a "20th century New Yorker," which Kline describes as the milieu from which the work of Wolitzer is drawn. And neither am I so familiar with the classics that I could come to the observation "we realize that he is Odysseus, wandering the world on his way home."

On the other hand, there's some stuff that's easy to review. All it takes is gunfights, pyrotechnics, and "a bizarre fencing duel involving cattle prods and chain saws" -- Gideon's Corpse. 

Sexercise, and Disability

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In thinking about the ramifications of an article about Cheryl Cohen, a surrogate partner and her interaction with a man using an iron lung (a film was made of the story), I found myself losing focus, drifting off into the idea that sexual intercourse appears to have become a "right" over the last few decades, a thing done for emotional and physical health, a work-out in bed rather than gym.

The odd thing is that the fundamental shift in societal mores disguises a more complex issue related to life with a disability that is revealed by the surrogate-iron lung occupant encounter.

Many states, for example, have personal attendant programs that allow a person with severe mobility issues to fully integrate into society. Many quadriplegics, once transferred from bed, bathed and fed, and plopped in a wheelchair, can function at high levels in the workplace. If that quadriplegic lives in a society that sees those accommodations as fulfilling the ideal of equal opportunity for all, it doesn't take a significant leap of logic to decide that person with a disability should have a full sexual life most people expect as part of adulthood.

Access to education, physical access to public buildings, and "reasonable accommodations" to offer equal opportunities to people with disabilities are critical in an open, democratic society. I want to be able to access the local courthouse. I want to avoid overt discrimination when applying for work. I want mainstream education. And yes, I want sex, but I don't think society should "accommodate" me in that regard by allowing me to sign up for benefits from the Department of Sensuality.

Perhaps some who advocate for sexual surrogacy might believe such rights are fundamental in a humanist society. But sexual surrogacy is classified as therapy for those experiencing what might loosely be termed emotional or psychological barriers to sexual intimacy, I would think providing sexual therapy would be restricted to narrow protocols, and on that list, there will be no reference to physical loneliness.

Cruel it is to judge, but I don't think (this being my experience only) that was the dynamic in the series of dalliances that inspired the film. Did he need to be taught how to be loving? Or did he simply desire the experience? I have no right to guess, but I would, being male myself, assume the man simply wanted the experience, wanted his curiosity satisfied. Again I cannot put myself in his mind, but I believe he simply wanted the sensual satisfaction much like he (or you or I) might want to know the taste of whiskey, experience the euphoria or lassitude of cocaine or marijuana, or to see the Empire State Building. 

Human beings have appetites. The question becomes should all appetites be satiated.

The blunt truth is that an iron lung is a very small prison cell, at least when considered in a practical sense and when the metaphysical idea of will (the ability to live fully and gracefully within material limits) is set aside.

But the thing no one -- the writer, therapist, those making comments -- has touched upon is that the greater truth is that the iron lung is a metaphor for the social isolation with which many people with a disability must cope with daily.

However difficult it might be for a man in an iron lung to meet a female who can see beyond the disability and regard him a suitable romantic interest, the difficulty is irrelevant if the man cannot reach the places of social interplay that lead to love and marriage are played out. 

In some sense then, if sexual fulfillment is a right, the access to the companionship of available partners is a right as well, which I don't think can be wrung out of The Americans with Disabilities Act. No government bureaucrat can make a friend for you.

I can only feel empathy about the whole affair, having lived through the bad old days when people with disabilities were excluded from almost every routine activity. I believe in the ADA and appreciate all that its implementation and enforcement have accomplished, but we remain far from universal access -- every home being fully accessible and easily reached by public transport.

Until then, I suppose, people with disabilities will continue to be restricted from being fully engaged in society and thus often left to these contortions that allow our needs as human beings to remain subject to the paternalistic gratuities of the medical profession.

   

Sexercise

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Sometime after Kinsey, sometime before Masters and Johnson, came along a few micrograms of chemicals that changed sexual congress forever.

Sexual intercourse is for procreation, say traditionalists. It is the most intimate of bonding rituals between man and woman, affirming the permanent pairing generally required for a stable family. I accept that.

I also accept that males of the human species can regard sex as a contest, a sport, an affirmation of power, or even a matter of seeking fundamental obeisance from the female of the species, a dynamic altered only slightly by the invention of the contraceptive pill.

Although I cannot testify personally, the use of the pill, and secondarily the right-to-choose movement, have in some environments allowed sexual contact evolve into a thing no more important in a day's activities than a good work-out at the gym, a thing to be done for physical and emotional health with the same degree of commitment generated by a date to play tennis.

Or at least the popular media would have us believe. How prevalent the hook up mentality is I don't know.

Into that mindset (my own) came an article about Cheryl Cohen, a surrogate partner. The link sent to me by another writer who knew I had served some time in an iron lung.

One of her clients, the poet and journalist Mark O'Brien, was stricken with polio at 6 and spent most of his life in an iron lung. In 1986, when O'Brien was 36 and a virgin, he hired Cohen Greene as his surrogate partner. They met six times and remained friends until O'Brien's death in 1999.

Their story is now an independent film, "The Surrogate," which premieres Jan. 23 at the Sundance Film Festival. Starring John Hawkes ("Winter's Bone") as O'Brien and Helen Hunt ("As Good as It Gets") as Cohen Greene, it's adapted from a 1990 article, "On Seeing a Sex Surrogate," that O'Brien wrote for the Sun magazine of North Carolina.

I read the article and the hundreds of comments, a good majority of which jumped to the conclusion that surrogacy is prostitution.

First, setting aside the framework of morality, the difference between surrogacy and prostitution lies in intent. The woman's announced intention is therapy. To recognize that, though, a person must understand she functions within the parameters of belief where the right to sexual contact is a right akin to food or shelter.

Even before bringing disability into the equation, I regard the issue so quantum-level complex that I have nothing rational to say, really. I simply believe sexual interaction is more than an exercise to maintain physical and emotional health. But if a person is barred from achieving the (not a) sexual bond by a physical or emotional problem, what is that person to do? I can only answer for myself.

While all males lust, even those in iron lungs, there is an emotional parallel to physical lust: intimacy.

An emotionally mature male values intimacy -- a touch, a kiss, a caress -- a significant connection with his partner. I am sure the paralyzed man had his physical curiosity satisfied, but he had no relationship, no chance to know the surrogate intimately. What did the contact generate but satisfaction of the man's curiosity?

I have no doubt the surrogate crossed the paralyzed man's emotional barriers, albeit temporarily, but in an iron lung -- or even with a physical disability that isolates a person from social interaction -- those emotional walls are very necessary to exist successfully in relative isolation.

Do we know the full story? I think even those who have read the article in The Sun that the man in the iron lung wrote will ever comprehend all that occurred within the heart and mind and spirit of that man.

I do not think even the most introspective of us, the most self-aware and analytical, are capable of fully exploring all that we are capable of feeling. I know I have never revealed or explored the depths of my emotional fragility, how close I feel to the loss of control, the depths of my anger, the expanse of my loss, because of the constraints of my disability. I have learned that exploration is a desert without water.

Finally, there is the philosophical element: the triumph of will, the choice to focus on the absolute, the power of prayer, the comprehension of what cannot be changed.

Stephen Hawking spoke about disability in this way. "One has to have a positive attitude and must make the best of the situation that one finds oneself in; if one is physically disabled, one cannot afford to be psychologically disabled as well."

"Who, who, who, who? Who are you?"

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"Do you identify yourself as a person with a disability?" such was a question I was asked as part of a doctoral dissertation. Not mine, sadly.

I find the question interesting, but it was days later before I thought about how the question, in some measure, reflected the focus of a feminist complaint: the idea of being, "Oh, you're the doctor's wife" or "you're Jeffrey's mother, the youngster who just graduated summa cum laude."

Do you identify yourself as a person with a disability?

Yes. And no. In my usual verbose and yet ambiguous fashion, I replied, "I don't, and I do," going on to expand on that over two or three sentences.

As a person grows older, a common human experience, the person will always identify that "self" according to circumstances within the moment. At a fifty-year high school reunion, the person will focus on all that was, or should have been, in his life as a high-school student. 

We are emotional chameleons, taking on according to circumstances the varieties of identities formed by environment or the experiences of our life process. At a high school reunion, it will be a rare personality that doesn't find itself navigating through incidences that bring back the feelings of awkwardness typical to teenagers. 

We are many things. I think of disability not as an Identity but rather as Exigency. Perhaps that is because I was disabled at age seventeen. Within the circumstance of "self," I am disabled (which in my mind means "restricted physically from living out my desires), but I am not a person with a disability. I am a person, but disability does not influence my person-hood.

But I do comprehend that, for example, if I'm plopped down in the middle of New York City, I will be seen first as a person with a disability and be labeled (negatively and positively) with all that implies until I interact with a person or with people to the point my own person-hood allows my wheelchair to fade into the background. 

Disability may not be destiny, but disability loads a person down with perceptive baggage.

Ask me again, am I a person with a disability? This time I'll say "Yes." Why not, if it suits my purposes? I didn't refuse Social Security Disability Income as I approached age sixty and my post-polio syndrome made it impossible for me to work full-time. If it is raining or nasty, I'll use an accessible parking space if one is available. I love automated doors and curb cuts. I complain about restaurant tables too low or too high to accommodate a wheelchair user.

"Am I a person with a disability?" I refuse to be, or not to be. And so I ask you not to tell me I am such, perceive me as such, or identify me as that, and that alone. I don't like it when people point out my disability and attempt to treat me in a "special" fashion based upon their own concept of how a person with a disability should live in the world. 

I am a person with a disability who only wants disability to influence the way I make my way in the world on my own terms.

"Good luck with that," right?

Thanatophilia Is a Poor Excuse for a Sadism

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I wasn't very much interested in the issue of assisted suicide and euthanasia until about ten years ago when I first had regular access to the Internet. Shortly thereafter I met the good folks at Not Dead Yet and learned how deeply prejudiced the euthanasia movement can be against those of us with disabilities.

Naively, I'd always thought that those who kill themselves generally are in deep emotional or physical pain and find death an acceptable solution. No one can know how much pain he or she might tolerate. I cannot judge others. I am too weak to judge others.

But killing oneself and being assisted in killing oneself are two different enterprises. What I do know is that government-sanctioned assisted suicide will eventually lead to "a wink-and-a-nod" euthanasia. There is, after all, the example of Holland and The Remmelink Report.

What troubles me is that so much of the outright advocacy for assisted suicide, or euthanasia, has an aura of thanatophilia -- an undue fascination with death.

I was reminded of this today when reading a story in the online edition of Britain's Daily Mail, an interview about and excerpts from a memoir titled So Far Away, by Christine Hartmann.

When I was in my early 20s, my mother told me she wanted to kill herself when she reached the age of 70.

She was completely calm as she explained her decision. By contrast I sat on the floor of my flat, shaking.

Ignoring my distress, my mother continued to discuss her plan to commit suicide in 20 years’ time, before she reached ‘old age’. She explained she would eat wisely, exercise daily, and take her blood-pressure medication. She would do her best to maintain good health and good spirits until the final moment. Then she would take her life. 

Ugly, was my first thought. Self-righteous, pretentious, supercilious were other words that came to mind, especially as I read further into the story.

‘Killing yourself is selfish.’

‘Yes. I’m doing this for myself. But I’m also doing it for both of you. You’re too young to understand, but someday you’ll be glad I did it this way.’

‘I love you. Please don’t do it.’

‘I love you too, Tina. But I’m going to do it anyway.’

Over the next 20 years we would have this conversation again and again. She insisted her action would be the best for everyone. It gave her peace. But it tore me apart.

 Perhaps cruel is the best word.

The odd thing is that the daughter identifies herself later in the story with "I believe strongly in the 'death with dignity' movement ..."

"Dignity" seems a concept at odds with what euthanasia brought to her life.