Dancing Mind Press

My column responding to Mikita Brottman's "Nutty Professors"

2010-04-22T21:45:00.000-04:00

You're right. This does go back a ways: four and a half years, but I assert the relevance of recollection now. It's hegemonic for sure. This is the piece that was published in the now defunct Ann Arbor News as a criticism of papers that ran Brottman's article. To make sense of it you'll need to go to the previous post with its link to the trigger article, "Nutty Professors" by Mikita Brottman. The only piece the A2 News didn't include is bracketed. Perhaps they were embarrassed. A number of papers removed her therapy practice from the author blurb, presumably after being informed of her absence of credentials. I believe Mikita Brottman is now in California and gets things published in the Huffington Post. WTF!

Other Voices: People with Autism Deserve Better Than Brain Bigotry

The Ann Arbor News, Oct. 31, 2005

I don’t know which is more frightening: the hate speech/office gossip of Mikita Brottman (Other Voices, Oct. 11) or the fact that it’s seen by editors across the country as appropriate editorial content. Brottman writes of two difficult co-workers whom she diagnoses with an autistic abnormality, Asperger Syndrome, even though the characteristics she describes have nothing to do with AS, even though her article violates the privacy of her subjects by pinpointing the campus with which they were associated in the recent past making them easy to out, and [even though Brottman claims to be a psychotherapist without any credentials at all]*.

That Brottman generalizes from two anecdotal examples should be considered suspect. By doing this she creates a portrait of a clearly obnoxious colleague. (I could speculate that she did what she could to make her co-workers’ lives miserable, but that would be following her lead.) She also implies that when a professor is not eccentric but has Asperger Syndrome, he or she should not be hired much less granted tenure.

And there it is, brain bigotry, the last shameless prejudice.

By reclassifying her colleagues from eccentric to AS, Brottman is choosing a spot where she is free to bash as she wishes. And publishers of newspapers (including the online Chronicle of Higher Education) see nothing wrong if they see it at all.

In fact, Brottman’s right to the thorny crown of martyrdom at the hands of these two colleagues who are, after all, gone, is nothing compared to the authentic suffering of all autistics at the hands of people with views like Brottman’s who see them as inhuman, thereby missing out on the great but divergent humanity these kids offer for the taking. Instead, children are subjected to violating treatments to make them more likable, easier to love. Sometimes the treatments, from suffocating restraints to snake oil, have killed; sometimes a parent will murder, but the demon child is seen as understandable motivation and indictments tend to be weak.

As adults, autistics are subjected to excessive scrutiny thanks to perceived oddities that are after all just oddities and nothing more. Since affect doesn’t coordinate with inner state very well, we are perceived to be indifferent, aloof, uncooperative, guilty, secretive, unfeeling, blunt. Yet we are asocial but not impersonal.

Some neurologically typical people are the opposite, with a knack for reading social settings but no sensitivity at all to others as persons. Lacking social intuition, we simply meet others as individuals of presumed value. We seldom take offense, hold grudges, lie successfully, or take advantage, because our brains lack those social capabilities.

Yet our circumstances in community, society, and its institutions, such as education, employment, criminal justice, and commerce, are almost certainly treacherous. While making twice the effort of neuro-typicals to function well, we are easier to arrest, convict, fine, fire, not hire, scapegoat, dismiss, overcharge, undervalue, marginalize, disenfranchise, and otherwise penalize for our non-conforming neuro-biology. The financial setbacks alone, like those faculty let go at Brottman’s institution, are considerable.

Each day is open season, and we struggle to pass for normal to keep ourselves safe.

I’m one of those Aspies in academia and I must say my work is grueling.

It’s not my world I teach in, so I can never forget my place. But I have also been greatly rewarded. I have lots of former students who are buddies for life, colleague friends I treasure, continued capacity for self-renewal, curiosity, and hope, and a firm grasp on the gifts of my autism. Yes, gifts. My strengths are not in spite of AS but because of it. We must celebrate neuro-diversity if only to strip people like Mikita Brottman of publicity and validation to which they are not entitled.

Nutty Professors article

2010-04-05T15:07:00.008-04:00

I mentioned way early on in blogging Mikita Brottman and her notorious article, "Nutty Professors," which recommends that universities refrain from hiring autistic faculty. The link I gave for the article was to the online edition of the Chronicle of Higher Education, which first had the bad sense to publish it. Alas, it is no longer free there so I'm including the link to the article as it appears in the Los Angeles Times. I'll try to fix the earlier link but figure there might be something galvanizing about a second look for some of us in 2010. Here also is the link to Kathleen Seidel's meticulous deconstruction of the article. Note that the LA printing still identifies Brottman as a practicing psychotherapist despite her absence of any professional credentials for that line of work.

Nutty Professors by Mikita Brottman
Copyright 2010 The Chronicle of Higher Education. Reprinted with permission.

http://find.galegroup.com/gtx/infomark.do?&contentSet=IAC-Documents&type=retrieve&tabID=T001&prodId=PROF&docId=A147068084&source=gale&srcprod=PROF&userGroupName=lom_washtenawcc&version=1.0

Draft copy for revision to Women from Another Planet?

2009-12-21T17:57:00.006-05:00

Hello. I couldn't get this to show thumbnail portraits but here is the draft text of tributes to be added to WFAP?. Comments welcome. Also, if anyone can unearth Debbie Storey's birthday and year, I would appreciate it greatly. She lived in Essex. Thanks.

Remembering Autistic Women
Patricia E. Clark

April 13, 1944 - July 17, 2005

Patricia E. Clark died from complications of a stroke on July 17, 2005 in Atlanta, Georgia.

I am pleased to have included a piece by Patricia E. Clark in this book and to know that Dr. Ava Baker used her input to our email exchanges in the first two chapters focusing on our email explorations of what we are. Indeed Patty’s contributions in her sadly shortened life to the autistic community in defining its/our configuration, depth, and breadth are breathtaking.

Not only did Patty accomplish much in her public life as an autistic advocate, but in her own life as well. Considering the challenges of getting through the day, she took risks to assure that her life be rich and vibrant. This included, among many things, moving clear across the USA in her sixties from the desert Southwest to humid, temperate Atlanta, Georgia to make a new life with partner Jared Radin. Once relocated, Patty didn’t lag for a moment. She was willing to press on in addressing audiences antagonistic to AS concerns, appearing at conferences and taking the chance that something of her message would get through and provide critical insight tragically missing in the community of parents and professionals who have declared themselves the autism community. Patty was irrepressible and courageous. Searching for a way to encapsulate her contribution, I could do nothing more powerful than present this, the crystalization of her prophetic impact which I urge you to read and meditate on:

[Italics mine as follows.]
From the writings of Patricia E. Clark:

"Over 50 years ago I was diagnosed with autism. With the main "treatment" at that time being institutionalization, and forgetting the child was ever born, I was simply allowed to find my own way. No one, including me, was told that I had a disability. The atmosphere at the time was blaming the mother for being distant and cold - a "Refrigerator Mother." In self-defense, my mother never told anyone about the diagnosis.

Since re-diagnosing myself a few years ago I have come to a fair understanding of the disorder called Autism, and these links are intended to explain some of that. The primary thing I want to get across is that we are people of a different nature, not walking mistakes. There is good as well as disability in our differentness. We are more to be studied than pitied. Oddly, professionals dealing with "the autism problem" seldom seek the advice of adults with autism when they write out programs.

I have received a number of very long emails with plans for a child's future in great detail for the next 10 or 15 years, and also long, detailed accounts of what a child cannot do and pleas to have me tell the parent how to fix the child. The answers are twofold: (1) after 10 or 15 years the child will be pushing to move in certain directions if able to communicate. Communication is not necessarily in speech - children should learn keyboarding or sign language if they have great difficulty speaking. (2) I cannot "fix" your child, and neither can you. Some have metabolic problems that can be addressed, and you might find those. Most simply learn a lot as they get older and look very different at age 9 or 18 than they did when diagnosed with autism at age 2 or 3. Believe in that change and help the child learn.

It may seem surprising, but people with autism need peer support. Once we can communicate with our fellows and see that life can be joyous, not just shameful, with our neurological setup, we can accept ourselves and go on to do what we can do. There is no need to turn inward and keep the disapproving eyes of the world tuned out, once we understand that we are acceptable human beings as we are."

Remebering Autistic Women
Debbie Storey

- 24th May 2005

I haven’t surveyed the contributing editors, nor the many other noteworthy contributors to the book, but I would bet anything that Debbie Storey’s story resonates deeply with each and every one of us, and especially with those of us who are mothers.

Debbie Storey was a parent of autism spectrum children who was herself on the spectrum. She and her husband lived with their two sons in England where Debbie, troubled by her sons’ circumstances in school, sought help from the social services system. Little did she know that doing so, advocating for her children, would brand her an unfit mother. Attending case workers surreptitiously prepared a report documenting their belief that Debbie exhibited “attention seeking behavior” and that she and her husband were inflicting psychological abuse on the boys. As part of the ensuing investigation, one of the boys, Ben, was interrogated by a panel of 22 social service officials, and the process appears to have been traumatic to the boy who was approached by one worker afterwards who told him that his odd clothing and lack of peer social success were a consequence of his parents’ psychological abuse.

In the UK this phenomenon has been cast as a bizarre social permutation of Munchausen’s by Proxy, a disorder whereby parents become obsessed with finding and treating imagined illness in their children, to the extent of fabricating medical evidence through sometimes torturous assaults on their children. It is difficult to see the seeking of ordinary supports as being even remotely associated with such life-threatening pathology, but those of us “with” can easily infer that this assault on parents, because of our oddities, is essentially an assault on us—by proxy!

For some months, the Storeys lived under the omnipresent threat of social services arriving on their doorstep to remove the boys to foster care. After months of herculean effort—including testimony by such ASD heavy hitters as Lisa Blakemore-Brown—the Storeys were taken off the watch list.

In the meantime, Debbie was becoming increasingly and seriously ill. But when she sought help for the pain that was overtaking her life, she was met with betrayal by doctors who fixated on the likelihood they felt confident in ascertaining, that Debbie’s ASD gave her distorted (read: exaggerated, fanciful) perceptions of pain. They sprung to this conclusion, thus eschewing any serious diagnostic effort on her behalf. (It has been reported that her friends believed Debbie’s fear of losing her sons to care may have influenced her sense of whether she were entitled to serious medical care.) In March of 2005, Debbie was finally diagnosed with end stage cancer in her kidneys. She died in May.

In the aftermath, Essex social services responded tersely, "We are aware that Mrs. Storey was sometimes unhappy with what we were able to offer but we worked very hard to understand and respond to the complex circumstances of the family." Unhappy isn’t half of it!

Debbie Storey was an activist--evidenced by her avid participation in elists in the UK--and an indefatigable advocate for her sons. It is crucial that every one of us remembers her contribution and the factors that foreshortened it.

Reply to NAMI: The Trouble with People First Language and Its Unintendced Consequences

2009-06-15T00:12:00.003-04:00

Please eavesdrop on this letter to an official at NAMI (National Association on Mental Illness.

I’ve been given a sabbatical leave to design and work towards implementation of a Neurodiversity Project at Washtenaw Community College in Ann Arbor, Michigan. My name is Jean Kearns Miller, and besides being a full-time, tenured English instructor at the College, I am proud publisher, editor, and contributing writer of the first and, for five years only book addressing autism spectrum disorders in women.*

My own official diagnoses are chronic, recurrent major depression and AD/HD-I (inattentive type) with Asperger “traits.” The students who have driven my project have had dxes all over the DSM-IV, and certainly they do want to educate classmates, faculty, and the staff with which they interact about how it is with them. “I’m one of you but guess what? I’m one of them too.” Or: “I’m one of them but guess whatP I’m one of you, too.”

But a critical issue for all of us is empowerment. And this can’t be had through people first language and the ideology generating it because the only thing you can get from it is “I’m one of you.” People first language means that as long as I work very hard to appear NT (neurotypical) and relegate my entire humanity to servicing neurotypicals, I will make the case that I’m just like you. Truth be told, I’m not like you. And the more your people first language (and ideology) constrains and marginalizes us, the more our circumstances will stagnate despite public impressions conjured by “awareness.”.

I recently joined NAMI and feel sure your motives and all the substantial, heartfelt efforts of you and NAMI do worlds of good. No question at all. Enormous thanks! But I want to give you this perspective to inform your future work and request a turn inward, to”people with,” who inadvertantly become the Elephant Man as ambassadors to the NT world.

Can you envision a more in-your-face approach that would educate the public not only about the what those with psychiatric diagnoses experience from their dx but also what they experience as a result of the attitudes and behavior of the very audience you hope so kindly to reach?

THREE MOMENTS IN THE LIFE OF AN AUTIST

2009-05-06T22:14:00.004-04:00

I'll see if I can make this succinct, though I'm skeptical. I'm totally Irish and as we see it, why use one word when a thousand will do?
*******************
I was thinking the other day of times when I've felt most vulnerably, unhappily, intensely autistic. It's not that I lack autistic pride, but that I appreciate my prerogative to determine my 'outing,' and value people who sort of mind their own business and don't feel the need to scrutinize others' oddities. Live and let live is enduring wisdom. But I find when I relive experiences that it's not just trying to say something coherent to someone behind a counter, go nonverbal, melt down, and have people look at me weird that constitute truly hurtful experiences. That's just life for someone on the spectrum, upsetting, frustrating, regrettable, but in the end, inconsequential, especially if I make the flight, get the refund, whatever. But I can identify three experiences when I recognized in harrowing detail what I'm up against as someone on the spectrum.

Moment 1
I am attending the ASA (Autism Society of America) in Pittsburgh. I'm cash poor but I've been invited there by the publishing parent and email correspondent mother of an autistic daughter whose roommate I am. As I circulate the exhibit hall and sessions I know for the first time to what degree I constitute an it, someone reduced from whole person to problematic entity. Call it critical mass.* I make a valiant effort to humanize myself and my psyche and then it happens. My roomie networks with an autism publisher and she invites me to lunch with two of their reps. I find myself aroused by some topic of luncheon conversation and begin to verbally perseverate like mad on something that excites me no end, free associating into and around an elaborate and intricate line of reasoning and observation, when roomie looks at the other lunch participants and says, "See. She's just like my daughter!" Oh, dem pronouns! I am now the elephant man, third person singular, just like that!

Moment 2
I find out Tony Attwood is speaking in the metro area. I must give him a copy of WFAP? Perhaps he can do a wee expert blurb for a new edition. I have to teach in the morning but figure I can make ot from Ann Arbor to the Detroit 'burbs for lunch and Attwood's speech. Delayed just a little I arrive halfway through lunch to find no more food left. I paid for lunch! Those not on the spectrum will have little sense of how debilitating something like this is. On the other hand, whether I'm debilitated whereas an NT would not be, we've both been screwed. Either the caterer didn't cater enough food, or the conference attendees ahead of me got greedy, either way, I've stretched my executive function and budget to make it here and this is not meaningful to anyone but me. I arrived there wearing a makeshift sign saying "Ask me about my book." Had my sign been produced by a proper sign maker I expect I would have had credibility but makeshift means weird. NT culture is about the status quo and propriety, which provides income for sih=gn makers. EEEEuuuwwww! How not NT!! I tried networking those milling around but I was clearly off topic. The P&Ps (parents & professionals) in attendance lacked the capacity or interest (one and the same?) to imagine what women on the autism spectrum might possibly have to offer in their resolute pursuit of triumph over their children. I mailed the book to Atwood.

Moment 3
I am on my own turf, that is, until I come out. I and colleagues, Charles Avinger and Edie Croake, have just done a panel at 4 Cs ( the annual Conference on College Composition and Communication) titled "Normie Hegemony: Culture, Rhetoric, and True Life Adventures in the Land of the Neuro-typicals," my piece of which is "Normie Hegemony: Culture, Rhetoric, and True Life Adventures of Autism." The attendees are enthusiastic and I remain over the moon about the work of my disabled/disability studies CCCC colleagues in making the case for all of us. But feeling endangered in neurotypical hegemony swoops in nevertheless, and for me this happens at a session with an autism focus. In response to something said I, in customary excitable mode, say, "Autistics see NTs [neurotypicals] as grasping, needy." The audience laughs, heartily. Chagrined, I say, "Oh, no! I'm not joking!" And the audience, horribile dictu!, laughs. AGAIN.

It's that pronoun thing again. Reductio ad absurdum autisticam. Why do they willingly detach and discount?

Autism Today?

2009-05-01T21:56:00.006-04:00

Autism Today sent out a mass email to recruit people to be part of a panel based on the premise of cure for autism. Do I want to be on their cure panel? I don't think so. Their email and my reply.
**********************
Them:

Email subject: YOUR OPINION COUNTS THE MOST!

Hello!
As a valued friend of Autism Today, you can make a difference!By joining Find A Cure Panel for parents and caregivers of people with Autism, you will be empowered to share your opinions in vital research.What's more, for each survey you complete Autism Today will make a minimum donation of $10 directly to the KEEN Education Foundation on your behalf.Registering is fast, free, and your privacy is completely protected.
Click HERE to sign up now, and thank you for your continued support!Sincerely,Autism Todaynews@autismtoday.com2016 Sherwood Dr #3Sherwood Park, ABT8A3X3
********************
Me:
Autism Today:
Once again I am appalled at the way so-called pro-autism organizations are decidedly not pro-autistic. You are defining this panel around cure ideology which most autistic adults find at the very least frightening.

I am also diagnosed ADHD and I have to tell you how different the ADHD community is from yours. Take a look at CHADD, the major national ADHD organization (http://www.chadd.org). It is entirely inclusive. Not only are adult ADDers considered essential to any advocacy groups but many, many of the theorists, researchers, and prominent clinicians are ADDers themselves: Ned Hallowell, John Ratay, Sari Solden, and Terry Matlin, among others. Stephen Shore and Liane Holliday Willey are perhaps the only two invited to the ball of the "autism Community." Perhaps if we all could become cognitive psychologists we would have the kind of critical mass to change the discourse on autism. In the meantime we look on in dismay and fear, for ourselves and the youngsters who are deemed unacceptable as-is.

The ADHD inclusivity keeps the cure hysteria to a minimum because people such as those I've mentioned are far from interested in being cured. In fact, the only place for cure rhetoric in ADHD is in quack internet ads. There is a growing pride in what ADDers are capable of even with severe problems like the statistically significant correlation between ADHD and marriage failure, incarceration, accidental death, and employment instability (e.g., likelihood of being fired), and particular torments suffered by ADDer youngsters: bullying, punishment for misbehavior, severe underachievement.

I'm not entirely sure what accounts for the disenfranchisement of autistic adults or the semantic lunacy of an "autism community" hospitable to everone EXCEPT autistics, but my best guess is an entrenched cultural belief that popularity, or perhaps, likability is what defines a whole person, Willie Loman in overdrive. If one cannot be likable, he or she is fatally flawed. Or maybe the culprit is stigma, pure and simple. I think there may be other issues in the personal narratives of parents that will never be resolved as long as they can hope for a cure.

In the meantime what does Autism Today have to offer me? How can I be sure your organization won't militate against my needs and deepest hopes? In terms of your list memberships and magazine subscriptions, what's in it for me?

Bestiary #1: I Am a Shiny Beetle

2009-03-24T19:50:00.001-04:00

I am a shiny beetle. They put me in museums stuck by pins. I strike terror in little kids’ hearts. Why? I am shiny. I am symmetrical. I have curved pincers—I guess that’s what they’re called—but Geezalmighty, I’ve got to have something to eat with. Will you allow me that? Or do I scare the Bejeezus out of you because you think I’ll bite? I’m not exactly one of those Amazonian ones that’s as big as a tortoise. And mostly I just eat garden stuff. But it’s true that once in a while, if I’m scared shitless, I can rear back and let out this gigantic hisssss! But who am I kidding? I weigh less than an ounce. You weigh over a hundred pounds. Step on me. Go on. Squish me like a bug. I’m dead. See. Guts all over the place—what little I have. And I scare you? Get real. But I do have a secret and I’m told secrets scare the piss out of you. It’s that you can’t see my face. I’m not even sure I have one the way you think of faces. My eyes are pin pricks and my mandibles are more like something out of John Deere than your mouth. I can’t grimace. Or grin. Or smirk or frown. Or express myself in any way you’d favor or even notice. You have no idea what I’m thinking and you can pretty well guess that I don’t take you seriously as a person. What squishes me could be a rock or a bag of groceries. What I perceive vaguely in the shadows could be a hand, a bird, or a scrap of paper. Life is pretty much reduced to physics for creatures like me and truth be told, you don’t and never will matter to me. If you threaten me I’ll hiss my genetically programmed, automatic, compulsory hiss and maybe I’ll scare you but it’s nothing personal. And maybe that’s what makes you crazy. Maybe if you figure you have a chance to charm, persuade, establish rapport—like you do with, say, a dog—I’ll make you feel good about yourself and your self-esteem won’t be lying in a heap. I don’t give you anything back for who you are, because I just don’t care. And that means I’d stomp on you if roles were reversed and maybe if you were a leaf I’d chomp into you without regard for your nice family, humanitarian impulses, and talent for…the flute. I am harmless and—HHHHSSSSSSS!—that’s what scares you to death. Am I right?

The Winter Breaks 2009

2009-03-04T15:41:00.000-05:00

The Winter Breaks

Some of you may remember that I experienced three sudden hospitalizations a year ago. The first stretch, lasting nine days, occurred after I nearly died--twice. The second near death experience happened whilst flunking my stress test at the U. Go home? They had a room—good grief! They committed me. Just like that. There go the errands.

Then they sent me to the cath lab, where they feed a catheter from a groin artery all the way up and through and around the heart. Afterwards they assign a tech to stand by your gurney and press down with all their might on the “wound” (the hole they just bored) so you don’t lose blood. I was heart-cathed, MRI-ed, CT-scanned, X-rayed, heart-cathed again, during which I was outfitted with one arterial stent, at a cost of, yes, blood. (The gurney guy must not have had his heart in his job.) Two pints of O-neg transfused and the cardios figure maybe I’m cured.

The stent wasn’t, strictly speaking, warranted according to protocol since the artery, first measured 30% occluded, revised upward to 50% after another scan, eventually bumped up to 70% based on I don’t know what. But even 70% doesn’t meet the criteria, and the other arteries were clear. But stents are what cardios do. They did it—job well done. Clean bill of health. Pack up your rubberized bed socks, plastic basin, puke tray, and toiletries.

“Not so fast.” On come the electro-physiologists, cardiologists with an additional residency in the heart itself and its beatings. They observed that my heart was going whacka-whacka, accounting for all the instances of severe chest pain and shortness of breath. Down I went to get my heart ablated. Ablation is cautery of places in the heart muscle tissue that are wildly arrhythmic, ending the patient’s v-tach (ventricular tachycardia) and associated medical crises, thus freeing the patient. Libre comme les oiseaux! Not exactly. I emerged from surgery with a stiff, metallic, electronic playing card under my flesh between my tit and left shoulder. This is an ICD (implanted cardioverter defibrillator), a device that acts like a pacemaker (regulator) and if that doesn’t work you get zapped. Think about those medical TV shows where they bring in those paddles and say, “stand back!” ZAP! And the body bounces up off the bed. That's the power in my device, within my flesh.

The interesting thing about the ICD is that its bearers have something like a community thing going, thanks to the manufacturers who spring for these bonding events: meetings, parties, annual picnic. The Christmas party was a lavish spread. I digress.

I got the ICD, I’m told, because too much of my heart needed cauterizing. It made no sense with an ICD available.

So with stent, ICD, and an array of cardio meds with unpronounceable names, I exited the Umich Hilton after nine days, nine days of: watching endless judge shows, Bridezillas, reruns of Monk, and How It’s Made: curling pucks, cricket bats, inner spring mattresses, Hokey sweepers; roommates like the bellowing Alzhie, Seraphina, and the woman whose husband yelled his belligerence at every staffer crossing the room threshold; and bands of baby docs, nurses, more docs, more nurses, people with hospital ID and indefinite job description, all looking down upon me quizzically, then asking oh-so-delicately if they could “just…take…a…little…peak…at your, um, groin…area?” (I wonder has anyone said no. Or hell, no! I wonder whether someone could be in such denial about the way of hospitals and their identities as technical organisms to feel any delicacy at all. Many things are mystifying though.

Peace in the valley. Not quite. A week later, feeling clearly dreadful, I had no choice but to return. The diagnosis this time: acute renal failure. How do you like that? One of the unpronounceable meds was apparently shutting my kidneys down. But that was just overnight, sort of like a sleepover.

Things went more or less OK, if brisk walks around New Orleans were an inidcator, notwithstanding periodic angina, but I had my granny pills (sub-lingual nitro-glycerine) and I felt good. I started cardio rehab in mid-April, progressing well, but then I got zapped. One of the elists calls ICD folk joeys until they get “fibbed,” thus morphed into a kangaroo. Pleased to meet you. I had a no good, very bad v-tach episode, between the parking lot at work and my office. I was dying all along the way. Heart wild, brain flooded with explosive special effects. Then my trusty ICD rose to the occasion as I sat on a chair near the elevator I’d made it into, not dead. ZAP, and I was good to go, a full-fledged ‘roo.

This information was fed from my bedside monitor through the phone lines to the ICD clinic, whose staff were concerned. At the same time the angina remained and my QT interval was squeehunkie, so it was decided, while I was at the cardio rehab clinic getting ready to aerobicize in my cross trainers, shorts, and jogbra, to ambulance me back to the U for another stay to sort my treatment regimen out. This was the second to last week of the semester; I stayed six days, getting out just in time for finals week.

My intimate relationship with the cardiology establishment continues but I have most of my life back. I’m doing well. So this past week, winter break, I felt a comic flirtation with the memory of the previous winter break, the first hospitalization, that last week of February, 2008. Would I make it through without hospitalization? Of course. Silly. Could I be cursed? Doomed to a re-peat? Nah. Kind of whimsical to speculate, eh? But creepy anyhow. And creepy it was.

On Thursday afternoon of winter break we were visited by a stray cat I had come to call HLB, the horny little bastard. Our cat, Cookie, dumped on our property as an eight week old kitten in September, had been kept indoors since then so we had postponed spaying her. Once HLB got a whiff of Cookie in heat, he came around. A lot. Mewing quietly. Earnestly staring in through the window. Rolling around on the deck. He’d circle the house, yowling his unrequited angst. So on that Thursday, February 26, 2009, on one loop I went out and keeteekeeteed him and he came over. HLB is one big lug. At least 12 pounds, ergo fed, perhaps owned. But his coat was a bit matted and at his neck I could see vestiges of an embedded collar. Collar gone, neck shorn and possibly stitched. I leaned over and he seemed to welcome my chin rub till I got too close to the wound. Lightening fast, he bit and scratched me deep into my thumb. OK, so I wanted to see the neck scar plus I thought I could see if he had balls. My fault all around. One doc would call it a provoked attack. Jean, Cat Provocateur.

I went inside to wash my thumb well, slather it with antibiotic ointment, then bandage.But my thumb grew to the size of a very large fig. I’ve had plenty of bites and scratches, but this time they were so very painful I couldn’t sleep. NSAIDs didn’t help at all. In the morning the thumb was purple, red, green, with a bit of yellow and it continued to hurt like hell. I know what you were thinking. Why didn’t she go to the ER? Gosh. An Irish nurse’s daughter, it was chin up, others have it worse. Others go to the ER. I knew though that a trip to the vet to buy meds would resolve this stalemate. Vets and techs know their bites and scratches; they’d tell me what to do. And they said to go to the ER, right away! It’s happened. Winter break and I’m back at the U, by way of Saline Hospital ER. I was stablized at Saline and given the most wonderful pain killer, dilaudid , through IV. (Trust me. If you’re offered dilaudid, take it.) And the ambulance took me away. Suddenly it’s déjà vu. My reflections from last year (above) suffice for this new visit, where I was reduced again to this pathetic, redundant humanoik in my pitiful gown.

Though I never was lanced or punctured, except for the IV and the one puncture did it all. But I was violated. Hospitalization is a drag but becomes a locus of sheer desperation when one is violated. IVs violate but can be endured and forgotten as long as it doesn’t take three people to each give it a try: stab, (“let me try”)stab, “that vein’s real floppy”) stab. But the major abdominal surgery to give surgical birth to my son was violating. The stent was violating. The ICD implantation was violating. Nothing this time was apt to violate, except for one thing. A PA raised the option of rabies vaccine. And I, quite sure HLB was NOT rabid, agreed. I had a bad feeling from the start. Then I was told I’d be getting six injections, one the vaccine, the other five gamma globulin. It was these that were nothing but violent. Fortunately, two nurses did them in pairs: stab, stab, stab--arms, hips, and buttocks.

More shots, the ordinary kind, await, but the gamma glubulin shots have left me shaken, agitated, fearful, weepy, and enraged! I’m thinking of Mr.Belvedere, a home remodeler in Detroit who did his own TV comercials in a plodding, sadsack monotone: “We—do—good—work.” I remember reading that the lethargic Mr. Belvedere had sets of dishes in his basement and when he was filled with rage, would go down and smash plates, and cups, and saucers against the wall till his madness dissipated. Me? I’d prefer dilaudid. But it’s about realizing that my body is penetrable, rippable, puncturable, sliceable, could even be smashed to smithereens. And here I am expecting my molecules to cohere. As they do all the time. As they show little inclination not to. I think there’s a word in chemistry to explain the tendency of people not to come apart. But there you are, violated, your faith in your body’s integrity dashed for good. Like Warren Zevon’s hockey goon from Windsor would say, “I just want to hit somebody!”

Meanwhile, my injury had to be reported to Monroe County Animal Control, which requires us to trap HLB next time we see him so he can be hauled off and euthanized. Not so fast. I don’t want them to cut his head off and send it to Lansing. Especially since I tried to look at his nuts. I mean. Give him a break. He was only protecting himself. And for this he should lose his head, not to mention body integrity? Cookie will be spayed. Her heat is over. Peace in the valley. Till next break?

On public discourse, gay marriage & fundamentalism

2009-02-23T22:56:00.004-05:00

Recently (@ 3 Feb.. 2009). Newsweek published a "My Turn:" column by one Richard Mouw, head of Fuller Theological Seminary in Pasadena, CA. You may be able to access Mouw's column at Newsweek's online site (or elsewhere), but my paraphrase is Mouw's wish, after voting for Prop 8 to dismantle gay marriage in California, to find some rhetorical safe space for discussion anyway.

Richard Mouw

Fuller Theological Seminary
135 N. Oakland Ave.
Pasadena, CA 91182

Dear Mr. Mouw,

You ask in your “My Turn” piece in Newsweek whether there is room for conversation on the topic of gay marriage. I think there may be a few openings to such talk, assuming you really want conversation. But first I have to say that I have put significant time and thought into this, out of a very daunting work life, so I would appreciate your reading it through. Thanks in advance.

1. The primary issue is the way we deal with marriage in the US. I don’t think there’s anything in civil marriage that speaks at all to emotional or spiritual matters. It is morally indifferent. Civil marriage is nothing more than civil union. The problem comes because, unlike some countries, for the sake of convenience and efficiency, the government deputizes clergy to stand in for the government by witnessing the civil union in conjunction with the religious one. Things would be put right by owning that civil “marriage” is a civil union and requiring couples to swear to that union at city hall. Those who wish could before or after or later that day be married. Those not wishing to have a wedding are as married as the law requires. This relinquishment of the efficiency of deputization makes civil unions, gay or straight, morally neutral. As long as our clergy play dual roles, fundamentalists will still make the false assumption that the presider is playing a single one.

2. My previous point is the key to both understanding gay anguish over prop 8 and resolving the issue. But while I’m using my “indoor voice,” I’d like to ponder something. Do you know that there are a good many gay people who share housing but who are just friends, ordinary roommates? I ask this to make a point, that whenever one learns that a person is gay they feel perfectly entitled to speculate about private matters that are none of their business. Fundamentalists feel justified in, say, not renting to gay couples because of what they believe gay couples do. I am a straight married woman and I can assure you that someone discovering I’m married will not begin such speculation about what my husband and I do in bed, how we like it, whether what we do is kinky, and they will even more certainly not make such intrusive thinking the basis for relating to me. The truth is none of us knows for sure each other’s private behaviors and we are not entitled to know them. It is perverse to relate to people this way. Yet fundamentalist assumptions about gay marriage seem to be stuck on such sick premises. Even though marriage is associated with a sexual relationship it doesn’t mean that a particular marriage is sexually…anything. Even consummated. It’s wrong to base public positions on intrusive private speculation. Some religious people condemn masturbation—sin of Onan, and all—but no public positions address that, so nothing is done legally to thwart such behavior. Why don’t religious folk champion such a law? Religionists’ stance against gay marriage may be more a function of sinful-mindedness than holiness.

3. Another fairly quiet musing is that taking an anti-gay marriage position on supposed religious grounds makes sense only if you were to allow that marital sex is singularly not meant to be pleasurable. This is what the Roman Catholic Church in Ireland used to market. Women were to confess as sin refusing to do their wifely duty. This duty couldn’t possibly have a connection to pleasure, much less romantic love. Male sexuality was more or less about orgasm as something like using the toilet when you’re desperate to pee, relief at last! Of course that momentary relief was a lot more than the wife could ever expect. In that religious context one needn’t feel any attraction for one’s spouse; indeed such attraction may prove ungodly. If Christian marital sex is expected to be not pleasurable, then you have a point about gay sexual expression, assuming that gay sex is pleasurable. Chances are probably pretty good when conception and/or contraception are not considerations that gay sex is less fettered.

But if marital sexuality is permitted to be fully sensual between partners deeply attracted to one another—“My love is like a gazelle” and all—then it doesn’t make a whole lot of sense to demonize that pleasure for others equally committed to their partners and mutual spiritual growth. “My magnificent pleasure is good, spiritual, even, but theirs is a sin.” I don’t believe God—the power and love driving the universe-- is that mean-spirited or nigardly.

4. I teach advanced composition as a community college English instructor and this course focuses on argument and persuasion. One of the core principles of rhetoric (persuasion) is that one’s opinions have no public consequence. I say early on in my most theatrical tones, “Guess what? Your opinions don’t mean squat!!!! And neither do mine. I’m really, really fond of my opinions. I think they’re the right ones. But so-o-o wha-a-at!!!” Rhetoric is about public discourse and one must take publicly arguable positions.

Here’s an example. If someone subscribes to right-to-life beliefs (rhetorically speaking, this is an opinion no matter how deeply felt), one may not make this an argument. It’s private belief. What one may argue is the necessity of parental consent for minors. I could argue that if I had to be present to sign for my daughter’s pierced ears at Claire’s at the mall when she was underage, it makes no sense to exclude parental approval for a medical procedure that is far more medically difficult.

See the difference? This is a public argument, meaning it may be made by a right-to-lifer or by a concerned parent or by someone concerned about pediatric/adolescent medicine. One doesn’t have to subscribe to a belief system in order to see the sense in treating abortion as a process at the very least as invasive as ear-piercing. This argument also explains why parental “notification” is moot when it comes to medicine. Implicit in this is the inadequacy of the pro-choice argument, abortion as civil right. Yet someone doesn’t need to entertain a right-to-life ideology. They may see abortion as something that must to a great degree be decriminalized simply to acknowledge that women in desperate circumstances will take desperate measures.

This is the same pact with the devil made by the Allies in WWII. Murder is a sin, even if done to prevent misery, suffering, and slaughter, and stop a powerful, aggressive tyrant. (This is why war has to be a last resort and is the reason Winston Churchill was visited by the “black dog,” severe depression, and why my husband, a ‘Nam vet, lives with PTSD.) At any rate, fundamentalists have absented themselves from public discourse, preferring to mobilize against it.

Mr. Mouw, when you fret about marginalization, I suggest that you have made it impossible not to be marginalized if this country is ever again to be engaged in serious public discourse. You are not participating in public discourse. You do not wish to participate in public discourse. You have created your own dilemma. The only way is your way. You feel strongly against gay marriage. So what? I feel strongly against self-serving fundamentalists. So what? It is not your responsibility as a citizen to make sure sin does not happen. (It is not my responsibility to legally squelch self-serving fundamentalists.) It is not your responsibility to ponder what would happen if your children come to realize that their classmates have same sex parents, northat schoolbooks mention same sex parents. (Consider the damage done to children thriving in such families to see their parents demonized by your children, or else by the school system.) Surely your private beliefs are more compelling than that.

I must admit to difficulty in seeing fundamentalists as Christian at all. Such believers place no special importance on the words of Jesus in his three years of public ministry. Christ’s teachings if anything fade into the background in favor of Biblism, which appears to this outsider as worship of a book, which the late novelist, Paul Scott, with all due layers of meaning, called a hard rectangular object. In my tradition, the Bible is a record of salvation history and the Old Testament is mostly important in foreshadowing the New and preparing the way for Jesus. Whatever Leviticus says about ritual purity is a historical lesson. The New Testament supplants the Old, and Christ’s teachings reign. Not even Paul, as he inveighs against Roman orgies—as well as telling women to keep their mouths shut—is taken to heart the way Jesus is in his sermon on the Mount, the pronouncement that tells us what it means to be Christian. I may never understand how people consider themselves Christian when they appear indifferent to Jesus’s message.

Finally, I must register a beef. It’s about your tears. I have enormous difficulty according them any value as compared with the tears of those legally prohibited from being near their loved one as he or she is dying; the tears of children taken from loving homes because their parents are the same gender; tears of those who canot benefit from their loved one’s health insurance even though legally married couples, no matter their impurity, are able to get medical care, as well as pensions, social security, and much more; the tears of people whose loved ones are excluded from family gatherings and public celebrations. These are tears of anguish, not of mere social regret. Until you see yourself as cause for such anguish, you must bear the consequences of what you have done. The minute you voted against gay marriage, you gave up the right to feel misunderstood and forfeited the privilege of a voice in public discourse. When it came right down to it you eschewed public discourse in favor of the right to deny rights to fellow citizens. You’ve had your say. There’s no room for discussion. You saw to that. Right?

Sincerely,

Jean

Abuse by Proxy: Another Front in the War against Autistics

2008-11-26T17:25:00.006-05:00

As a woman on the autism spectrum and a self-advocate for autistics like me, I’m appalled by the case of Thal and Julian Wendrow, of West Bloomfield, Michigan, who were subject to abuse by the criminal justice system, having been accused of sexually molesting their autistic daughter. The charge generated from text typed by the girl through facilitated communication, a method in which an adult stands behind the seated child and puts hands on the child’s hands as she types. Its proponents see it as a sort of training wheels, which the child will outgrow. Though there might be a neuromuscular value in giving the child a feel for their fingers on the keys, proponents promise much more and deny that the adult’s hands could be really composing text, rather than the child’s. So when the Wendrow’s daughter typed the message that her father had been raping her for many years, the Wendrows were arrested and incarcerated for months without trial, he for multiple cases of child sexual abuse, she for not stopping it. Their daughter was placed in foster care and their younger son, who has Asperger Syndrome, was placed in a home for troubled, delinquent boys.

Indeed parents—as well as carers, professionals, members of the clergy, others with power over the lives of autistic children and adults—have on tragically many occasions harmed, even murdered the autistics under their care. Some have murdered through attempts to cure, obliterate, even exorcise the demon autism out of their children and wards. Others have murdered presumably out of emotional breakdown from caring for their autistic children. Others, for reasons hard to fathom.

Consider the extremely short life of autistic Marcus Fiesel, age 3, in the Cincinnati area. Under foster care, Marcus’s foster parents did the unthinkable. Before leaving for a family reunion, Liz and David Carroll, with the help of a friend, Amy Baker, taped Marcus’s mouth shut with duct tape before binding his body in a blanket. They left him for days in a closet in the middle of summer. Time of death is uncertain because the Carrolls and their friend took little Marcus’s body to an abandoned incinerator and burned it.

In the midst of finger-pointing among the trio, the Carrolls eventually were convicted, first Liz, to 52 years to life, then David, 16 years in exchange for giving testimony against his wife. Baker was given some leniency, despite being fully complicit by the Carrolls, and was to be extradited from Kentucky to face reduced charges but all charges have now been dropped and she is free.

Among important features of the Fiesel case is that the circumstances were so egregious as to generate public outrage. Another noteworthy feature is that at least the Carrolls received sentences that gave a nod toward the seriousness of the crime, though just a nod. In most cases, if one murders an autistic conviction is far from certain and sentencing is usually far from punitive.
The underlying assumption is that autistic people are hardly people at all, certainly not whole people whose lives unfold as others’ do, whose developmental trajectory and particulars will proceed in fits and starts like those of most people, achieving what they achieve, much the way neurologically typical people do, even though autistics are astonishingly different, seemingly unfathomable, sometimes dauntingly difficult to care for, and often incapable of independent living. There is implicit compassion in all our systems for those who appear to have gone off the deep end, as well as those who torture autistics to modify behavior through application of so-called aversives and sadistic religious rituals.

No other brain disorder has been stigmatized like autism. Look around you. The alarmism about autism is ubiquitous. For example, in a public service announcement on VH-1 classic, rock musicians--who have made their fortunes acting weird--compare the incidence of autism with cystic fibrosis, diabetes, and childhood cancers. The sky is falling. Or so it seems.

My perspective might suggest that I take a dim or at least skeptical view of the Wendrows and their situation. Quite the contrary. On the one hand they have been subject to a phenomenon already seen in well known child sexual abuse cases like the McMartin pre-school in California and Little Rascals in Edenton, North Carolina, a case documented over some years by PBS Frontline’s Ofra Bickell. In the Little Rascals case, one of the most damning outcomes was the conviction and long term sentencing of one of the Edenton child care center’s teachers, a 20 year old mother of a toddler, to a draconian prison sentence.

Eventually the charges were dismissed and all those in prison released, as was the case with the McMartins. The parallel with the Wendrow case is an overly zealous approach to child sexual abuse involving scapegoats who are usually innocent enough they are easy for the systems that manage us to pounce on and punish.

But there is also a disturbing dimension of this case that is coming to be seen in families of autistics. Consider Debbie Storey, autistic mother of two autistic sons.

Debbie repeatedly approached social services in Sussex, England to demand services for her sons, only to be declared an “attention seeking” mother. From a grotesque outlook, they transformed Debbie’s inquiries into a disorder called Munchausen’s by Proxy, in which care-givers may go so far as to inflict pain and injury upon their children so that they will be subject to an endless series of medical treatments that satisfy some pathological need in the adult. I don’t know how school social workers decided they had this expertise, nor what Debbie Storey may have said, if anything, to ignite suspicion. Asocial, she may have reacted with vocal and body language they deemed odd. (I may well have under those circumstances.)I don’t know.

The Storeys from that point on lived in fear of the removal of their sons. One son, interviewed alone by a panel of 22 officials, was told afterwards that his lack of social success and his odd clothing showed the extent of his parents’ emotional abuse. Mere months later an even greater tragedy befell Debbie Storey due to the System's declaration of her diminished capacity for mothering her sons. Debbie came down with severe, unremitting back pain and doctors, dreadful to say, denied her appropriate diagnostic evaluation, deciding that this was indeed more of Debbie’s attention seeking behavior. In effect, the pain was all in her head. Adding to the tragedy, Debbie realized that this conclusion could trigger the process of losing her sons. She could do nothing. The decision of social services was made in early fall of 2004. Debbie Storey died of untreated kidney cancer in May, 2005.

Unlike Debbie Storey, Thal and Julian Wendrow were not themselves autistic yet something comparable happened to them. The efficacy of facilitated communication in enhancing the communication skills of children is much debated, but at the very least it would be impossible to see FC as hard evidence because of the intrusion of another pair of hands in the typing process. Who exactly was it reporting the abuse and in what other ways might they have pressured the child for those statements while coaching her? In the day care centers in California and North Carolina, children were coached, prompted, and interviewed for hours on end until they agreed to statements that couldn’t possibly have been true.

It’s not hard to imagine that the Wendrow girl was especially susceptible because, as an autistic, she has known in her own way that the worldview of non-autistic adults is the one she needs to construct for herself despite lacking shared frames of reference with them. They are the ones whose reality counts. Even if she were becoming increasingly fluent, it would be almost impossible for her to come up with those statements on her own. Had her father abused her she would be highly unlikely to have a will to tell an abuse story to another non-autistic adult. Had authorities done their homework they would have known to look for the signs researchers have found typical in sexually abused autistic children: acting out sexually, running away, and attempting suicide.

The sad irony is that the suffering the parents were made to endure till the cases against them fell apart was in a sense an attack on autistics by proxy. The removal of the Wendrow children upon dubious evidence must have traumatized them. Moving an autistic child from familiar surroundings and people into an unknown setting with strangers suddenly replacing parents is a devastating attack on the child’s sense of safety and developmental progress. And moving a child with Asperger Syndrome into the midst of juvenile delinquents is nothing but punitive. (The Wendrow boy was also interrogated for hours much the same way Debbie Storey’s son was.) While direct attacks on autistics continue seemingly unfettered, this new form of indirect attack, under the guise of care, raises insidious new possibilities for abuse.

Some News & Regrets & an Apology

2008-05-12T19:58:00.000-04:00

Just as soon as my spring/summer pay starts coming in I will be publishing a revised version of WFAP? The number and extent of the changes depends on cost but one change that will happen ASAP is that the Foreword will be replaced. The number of pages and the page numbers will remain the same and so will the Table of Contents. What goes in are two tributes, one for Patty Clark, a long-standing, fierce & courageous activist in Atlanta who passed away a couple of years ago. There's one short piece of her writing in the book but she was quite prolific & I invite you to go to her memorial site to read her works & understand her stature in the autistic community. http://www.pattymemorial.org/ The other tribute is to Debbie Storey, another of our autistic women heroes who is as well a martyr. Her story is utterly tragic yet galvanizing. (Here are her stories: from life & after her death. (The second link has the video clip of the BBC's coverage.) http://64.233.169.104/search?q=cache:hs2m7USvUQkJ:news.bbc.co.uk/1/hi/health/3687612.stm+debbie+storey+autism&hl=en&client=firefox-a&gl=us&strip=1;
http://www.parents4protest.co.uk/p4p/mum_feared_social_services.htm

The existing Foreword will be deleted because it constitutes one of the biggest judgment errors of my lifetime. I blew it! The book began to take shape in, as I remember, in 1999 as lots of us women autistics contributed ideas, scraps of text, whole articles & energy & thought. One of the people peripherally involved was Judy Singer, a woman who self-identifies as being on the cusp between AS & NT. When contributing editors were meeting in Boston, Singer arranged a trip to the States to coincide with our meeting in October 2001. We invited her to stay in our room at the hostel and there she wrote what is mostly in the Foreword.

While there, I asked Singer to identify one, just one, autistic trait in her makeup. If she were on the cusp surely there would be one. No! Not one! (My personal belief is there's no such thing as a cusp, that AS wiring is a toggle switch: you either experience the world autistically or you don't, no matter what array of other traits you have or how you manifest to others. It's personal because I have a hard time imagining my being that ambidextrous. No matter how close I am with dear nt friends, our wiring is clearly different.) Yet I accepted Judy's submission, even though it was a year and a half late.

I knew Singer was the founder of ASPAR, the group of children of Asperger parents seeking healing. Early on in the book's chronology I suppose I didn't take ASPAR seriously enough. Word was that anyone who said anything slightly forgiving about Asperger parents would be kicked off the list. And one of the site's favorite pieces was by a woman who told the tale of bringing a boyfriend home at Christmas, only to have him intercepted by Dad who spirited the boyfriend to the basement to view and be subject to a very long perseveration on his train set. Fair enough: "it's Dad again!" But I'd be damned if I could see the tragedy in that. If anything, it seemed to be a personal reaction based on a string of disappointments to that particular writer, that would have currency in the intimate setting of an online support group. In short, they were entitled to their safe space for sharing and venting as they wished. I was outside their scope, therefore an onlooker whose business it was not. A similar group of children of volatile, emotionally immature dads would have resonated with me. Fair enough.

But during those years ASPAR's safe space for mutual support began to expand & permutate into a PAC (political action committee). And under Singer's direction, ASPAR ventured into militancy, an investment of force into preventing the Asperger parent from gaining child custody in cases of divorce. Now, some might say that the AS advocacy against NTs is comparable but NTs have supremacy. AS people are voiceless, powerless, at the mercy of institutions. Militancy is justifiable for us. But to militate against already marginalized, discounted, disposable persons because they are Aspers is a personal attack that defies any notion of social justice. As well, to isolate a single trait as categorically predictive of child abuse is far from the best interests of the child. This means other, more terrible qualities in a parent are ipso facto allowable by comparison.

Put in more intimate terms, I am an Asperger mother (see article in WFAP?) & so are many of the book's contributors. No question we are challenged by motherhood. No doubt we are odd. No denying we have all those traits ASPAR likes to inveigh against, but that doesn't mean we are negligent or abusive of our children. It doesn't even mean we are a royal pain in the butt to them. It's as Darcy O'Brien says, "a way of life, like any other." (My children, now in their twenties & uni students, have told me they are glad to have had an eccentric mother--rather than the conventional kind--because they were under no pressure to conform to social expectations. They could find themselves, find their way, without heavy-handed parenting. FWIW.)

Beyond this is agitation, I am told, is a demonization of Aspers. Autism is apparently, by their account, connected to many evils. Calling Hitler an Asper is manipulative rhetoric indeed. (Ted Bundy & George W Bush & Dick Cheney & other cheerful souls with blood all over them are NT.) There's something in this sort of thinking that relates to Mikita Brottman's legendary ignorant maligning.* http://chronicle.com/free/v52/i04/04b00701.htm

How can this book possibly be associated with a point of view antithetical to everything it stands for?

I am so overwhelmed by life I've become isolated & out of every which loop. This has been especially true during a recent three-year period of workplace harassment (put mildly) culminating in heart disease. Whatever lists I'm on are in digest form and almost entirely unread. I've been so preoccupied I read but hardly ever reply to emails anymore. So I deeply regret not having been more vigilant about this. Singer's piece must go.

But....what I apologize for, not simply regret, is that I had no business publishing someone who had clearly described herself as being NT, and had made a submission a year and a half after the submission deadline! These realities excluded her article from the scope of the book. I apologize & fear that this has been detrimental to the book & to the case of women autistics. Perhaps a new edition will cut the losses somewhat.

* Mikita Brottman wrote an inflammatory and badly written article damning Aspers in academe that first appeared in the Online Chronicle of Higher Education, followed by reprints in many newspapers across the US. After you've followed the Brottman link (above), do have a look at Kathleen Seidel's marvelous deconstruction. http://neurodiversity.com/weblog/archives/54/autopsy-full-text If you are new to the neurodiversity site, do look around it while you're there. I'm sure you'll find it a stunning achievement in both range & depth.

nts & NTs

2008-01-26T22:52:00.002-05:00

Permit me a rather extended analogy.

In the late 1970s when feminism was the object of considerable public focus, I worked as a tech writer in the petroleum industry, in good-ol'boy ground zero, Tulsa, Oklahoma. I remember attending a feminist poetry reading there & then and found myself feeling dirty, unacceptable as-is to those present. I wasn't conspicuously so but I knew I was unlike the women present--women certain they were, by contrast to men, the loving ones, the caring ones. (I refer you to my 11 December blog for an explanation of my estrangement from this thinking at a deeper level.) Up top I was working among misogynists all day long--and had been in previous workplaces in Detroit & Toledo. I was stuck with them. I had to deal with them. I had to make concessions & compromises just to get my work done. I was very seldom the object of sexual harassment--co-workers said the executives saw me as "brilliant" & "scary"--but I experienced my second rate humanity at every turn.

I struggled to keep it together and failed to be compliant enough to be successful in the business world--managers would crack what they believed was a joke, gave that visual survey of nearby women underlings to receive the requisite chuckles of appreciation & I would either exhibit flat affect, or no reaction to something that didn't strike me as funny, or barely suppressed huffing over the obvious manipulation. One awful man relied on me for ideas he couldn't invent on his own, since he spent his MBA studies chasing freshman students. The women who were successful in Tulsa were with no exception daughters of prominent men, who learned at their "daddy's" knee how to handle "daddy" admiringly. My experience with workplaces was a veritable socio-pathological circus.

The thing is, as child growing up in an Irish family with deep roots in poverty & despair, I didn't have the luxury of the kind of pristine feminism the women at the reading had embraced. I had to get my work done. I had to keep my job. I had to get it done.

Even the presence at the reading of my favorite feminist, Germaine Greer, didn't help, though I thought, considering her writings, that she may have felt somewhat restricted there. I remember her saying to someone that she rather liked North Tulsa, the most unfashionable, working class part of Tulsa, and the woman said something that presumed Greer was talking about hip, aesthetically funky, Reservoir Hill, a charming sliver of the north side. Greer, a woman passionate about her working class roots, meant no such thing. She meant the nice serviceable, unassuming, modestly priced cottages, charming enough were anyone to notice.

This was a eureka moment for me.

But one of the concurrent realities in the workplace has always been the presence of men who were not misogynistic, were not suits, didn't have executive airs & often made good work buddies. Were they sexist? Yes. Sure. But they were such a far cry from the creepy & treacherous misogynists, they were impossible to classify with the hubristics of the corner desks. This means it was necessary to make distinctions. When asked as a high schooler what my t-shirt would say, make distinctions was my answer. People who don't make them create much mischief. And one troubling thing the avid feminists began doing is venting their indignation upon lower case men because they were accessible and non-threatening. I've seen professors be stomped on for the use of male pronouns by such women, while their often misogynistic significant others, upper case Men, are off the hook.

I now feel an urge to transfer this case to the way things are in neurotypicalism. I'm not sure I can put my finger on it but I fear that a distinction may not be made often enough between nts & NTs. NTs are the embodiment of the dominance of NT hegemony. They are at one with the institutions & centers of power responsible for brain hegemony. Chances are they align themselves on the culturally rewarded side of all the isms. They have high social fluency & associate with others like themselves.

NTs are the beneficiaries of the goods of cultural hegemony. nts, on the other hand, either eschew those benefits for reasons unknown (some may choose not to be assholes), or have become estranged from the bennies & perks for any number of realities:

lack a high social affiliation need and/or dislike those with a high social affiliation need
are shy, introverted, and/or reclusive
have other neuroatypicalities besides autism, to include things we call mental illnesses (e.g., depression)
are slow to catch on to subtle, unspoken cultural rules (sub-clinically, you might say)
grew up in a different national or regional culture than the one they are presently expected to function
have roots in poverty and/or lower social class
have been devoting significant time to managing an illness or caring for someone with one
grew up pre-occupied with competitive individual sports, dance, music performance
find socializing tedious and highly social people insufferable
find odd ducks worth the effort of knowing
are eccentric, disdain conformity
are sensitive and perceptive
and more?

Trouble is these nts will blow it. Sometimes a lot. They are inclined to blow a hoped for bond with an a-typ by failing to recognize informative discourse for what it is. An a-typ mentions a difference in circumstances and abilities only to have the nt jump to the conclusion that the person is asking for commiseration or consolation. Responses include: "I get that way, too!" "I don't think you're like that at all." "Yeah, but you are so successful." All of these leave people like me heartbroken. We have been telling something as a matter of fact and hoping that the friend would put it in their field notebook on us so as to, perhaps, anticipate the impact of a particular issue or event on us--the way we, out of necessity, take note of significant others' requirements and limitations. I tell these things so that friends may know me in greater depth than is available through my social interfaces. I tend always to hope that my matters of fact will also serve an educational purpose for the confidant, enabling them to grasp the range of brain wiring they have access to in their daily lives. They just sometimes don't get i and that can be bitterly disappointing. But they are not the problem. They mean no harm. They are, in the main, accepting. Often they like us. They are nt in an NT culture, just as we're nAt in an NT culture. They are not NT culture itself nor its minions. We must make this distinction, despite its heartache, frustrations, and interpersonal burden. Because there are some with considerable power who do not wish us well at all, mean us harm, would do away with us if they could. They are behind our powerful institutions and don't want anything to do with us, much less be our allies. We need to cut our allies some slack even when hard-pressed to do so.

Indistinguishability?

2008-01-03T23:49:00.003-05:00

This blog is a comment I made on another blog. An autistic blogger had mentioned speaking out against ABA (Applied Behavior Analysis) to which a concerned parent wondered what was wrong with ABA. This is my response.
~~~~~

First off my official dxes are chronic major depression & severe ADHD-I ('I' stands for inattentive, meaning the 'H' is inside the head that sits atop the body of a slug) "with autistic traits." Second, this is MY take on it only. Seize what you can use is all.

On the surface of it I have heard (from someone crazy enthusiastic for ABA) that ABA requires hours & hours & relentless hours of concerted effort by both parent & child. As someone on the spectrum with a son who is likewise I can't imagine either of us surviving this process. Even when the parent is a full tilt extravert with an inordinately high affiliation need, the autistic kid is apt to need time out & maybe safe space in the home to rock, spin, toe-walk, avoid eye contact--whatever self-soothing is necessary to recover from such rigorous training.

ABA appears also to be woefully de-contextualized. "This is how you must act" as opposed to "you need to know how act this way in social (i.e., public) situations in (e.g.) the USA of 2008," the assumption being that there's a distinction between the impression you may need to make at times & who you are. This is heady stuff but it's worth some thought. And besides something like Carol Gray's social stories does exactly that (though maybe not with my cynical take ;-)).

The concept behind this is that we—no matter particular dxes—lack real life templates for just about everything. I’m going on 59 years of age & still have big problems perceiving things in a pattern. My motto is always “[shrug] people must have their reasons,” reasons I have little capacity to grasp or make sense of. Any educational resource that elucidates the templates is from my POV superior to resources of behavior mod.

The idea is to show the pattern, reveal the scenario. I teach English Composition full time & I work very hard to encourage students to size up writing situations (via the rhetorical model) so that they are not only able to dish out a passable so-called academic <--?? essay but make reasonable conjectures about how to approach the much, much wider variety of writing situations they will encounter in life.

I hope this analogy is informative: equating "good writing" with a fluency of limited application is misleading. Likewise equating, say, "hugging mom" as an absolute value means what ABA doing is training rather than education. It's not true development because development does not take place in a vacuum.

Perhaps if one could pick & chose from ABA what may TO THAT PARENT make sense, such a scenario may not apply but, having sat in that dreadful room listening to every which expert tell us how deficient our son was I'm inclined to think that many parents feel so devastated by this grim outlook they sacrifice their own instincts & core values & sometimes the amusement or awe they feel about certain of their child's ways in order to achieve for their child a relinquishment they see necessary to the child’s future prospects. The word used by ABA in its goals is that your child be “indistinguishable” from other [read: popular] children. To this odd duck this is scary talk. Indistinguishable? (Ouch!)

It’s alluring with such psychiatric negativism to sign on to such a promise. Truth is in the big picture things unfold in fits & starts & the child’s individual nature will take that unfolding in directions you won’t see at this point--& in the long run these may put you & your child in a surprisingly good place. You didn’t ask for advice but if you had my advice would be “Relax. Be confident you’ll do right by your child & your child will thrive no matter how dire your present circumstances may be. ”

Of course,I don’t know you, your child, or your circumstances but I have a feeling your post shows you’re doing a good thing, devoting thought to options.

I will finally say a couple of things. First, I know people who have worked with autistic kids who do NOT see my thinking as unrealistic & wrongheaded. This past summer I met someone who used to use tones (hums, actually) to relate to autistic kids assigned to her care. An autistic child would tone back with the same or another tone & in time, through this relating on the child’s social terms, she would have a real relationship with the child & the child would be thriving & willing & able to reciprocate according to the teacher’s social needs . Beginning from the POV that the child has something to offer to his/her developmental process as well as the adult/teacher/therapist/parent appears to have a powerful advantage.

Also, my experience with my son as well as my own developmental trajectory have taught me that acceptance & the genuine esteem of important others are fabulously powerful. We were in our son’s cheering section—even if that meant letting him off the hook from all those play dates we were being commanded to arrange & our son had no use for—& through that he has seemed to flourish.

When parents are so affiliation-oriented they see nothing whatsoever interesting/funny/compelling about their child & everything to compel social acceptability, ABA is to me a dubious, even dangerous strategy. When parents love their child as-is they are in a place to venture into growth & development & transformation. And if they find ABA attractive & choose to participate in it, it’s almost certain to be ABA on their own wholesome terms, which means devoid of the doctrine of indistinguishability & modulated into a humane, user friendly :-) process.

I do hope you can glean something of use from this. All the best to you & your child.

Welcome to the Online Home of Dancing Mind Press & jEAn Kearns Miller

2007-12-11T13:59:00.002-05:00

Hello!
My name is Jean Kearns Miller and this is my first & so far only blog.
The blog is named after my still incubating micropublishing business, Dancing Mind Press. The name is registered as my DBA in the State of Michigan, Monroe County, I have a whole binder full of checks for its checking account, and on the title page of the book I did publish* I've printed "A Dancing Mind book."

Note: I used a vendor for this book but my goal is to launch a revised edition straight from DMP along with some other titles. They will all require among many things a solid doable marketing plan. Many things are delaying the real kickoff (mostly time & money) and it may be still some years till "fleet week."

*Miller, Jean Kearns. Ed. Women from another Planet?, a collection of writings & conversations by women on the autism spectrum about what it means to be both autistics and women. I'm proud to direct you to the wildly positive (all fives) 10 reviews and the one spoiler (ones) at the amazon site. http://www.amazon.com/Women-Another-Planet-Universe-Autism/dp/1410734315/

(A word about the title. Leading up to its publication & much more so in recent years, talk about autism--in particular, talk coming from know-it-all NTs in the P&P (parents & professionals) lifestyle--has been awash in extraterrestrial verbiage. This may have been unfortunately triggered not by the title of Temple Grandin's seminal book but by its bizarre transference. An anthropologist ON Mars becomes and anthropologist FROM Mars. I reckon the P&Ps must need a thick blanket of denial not to contemplate their identity as Martians. So they pulled a switcheroo, making Martians out of autistics, an attitude that has promoted well the false orthodoxy of autism as a puzzle. So why the title? It generated from a quite different source, that book, Men are from Mars, Women are from Venus, an immensely popular book that conceptualizes gender in terms of the warrior Mars (men) & the amorous Venus (women). This book is of no use whatsoever to autistic women, except as a field guide to the mores of the neurotypical. Note the question mark in the book title about women on the autism spectrum, which perhaps asks readers to ponder what that means for those from neither Mars nor Venus. Another planet? Which one: mercurial Mercury? Jovial Jupiter? Many of us see ourselves as primary earthlings, people whose bond is with Earth, a planet currently under occupation by Martians & Venusians.)

A Rough Mission Statement
First, a preface

Dancing Mind Press began when I, in concert with other women on the spectrum, especially contributing editors Ava Baker, Jane Meyerding, Daina Krumins & Sola Shelly, realized that the terms offered by one of the leading publishers of books about autism were unacceptable. I suppose this qualifies as "no guts, no glory" but the issue came down to whether we would be willing to do our "Elephant Man" side show for the P&Ps with the vain hope of eventually taking over the reins of public discourse on autism. WFAP? really does provides rich information on women on the autism spectrum but in the context of (1) our lives as whole people (2) who are making our way through a world driven by systems of social & cultural treachery. We have plenty to say! People who have happened upon the book have written fan letters claiming that it:

changed autistic women's lives, in its authenticity & resonance with their realty as autistics which makes them see they are not alone.
provided parents with a source of hope, not based on the possibility of a cure, but on crucial insight previously unavailable in the P&P model
gave readers with all sorts of brain differences a sense of belonging to a larger neurological world that can make meaningful coalition possible & exciting in its prospects
gave multidisciplinary scholars something richly generative to think & rhetoricize about.

These needs are not being met in the larger book publishing industry. I dare to imagine that the presence of a fan base for the book such as I have encountered so far indicates the existence of many, many more who are highly receptive if not hungry for not only WFAP? but an array of works that will challenge, enlighten, move them. This in brief is my starting point.

Dancing Mind Press seeks to publish

Insightful work by different-brained authors based on the whole person model and eschewing the medical one. Various genres. Though individual conditions (e.g., autism, AD/HD) are included works are not limited to any one condition.

Works placing brain atypicality in a public, cultural, Systematized context to include social justice, civil rights, discrimination & stigma.

Multidisciplinary writings that can generate new ideas and transform or kick start thinking.

Works that affirm a necessary connection to disability rights & disability studies.

Elucidating works about life with an inconspicuous disability by those experiencing it.

Elucidating works by & about persons who have been minorities of one, so as to inform a definition of the concept of multiplicity (as contrasted with diversity) to expand our notions of difference.

For now this blog pretty much is Dancing Mind Press
Here on this blog I will,

Write stuff: informatively, expressively, persuasively, and aesthetically on an array of subjects & ideas.**
Publish your comments
Provide links and must read news bits for stuff related to my interests & themes.**
Move forward with the press to its launch partly by expressing the evolving mission statement.

Subjects & Ideas & Interests & Themes (a sampling anyhow)
Subjects & Ideas/ Major

Brain Power: stigma obliteration
Brain Liberation: advocacy for & celebratory acceptance of the different-brained, as the whole people we are.
Neurodiversity & Neurotypical (NT) Supremacy
Disability: all, any
So-called "Invisible Disabilities" (I prefer "inconspicuous"): all, any
Mental illness
Workplace bullying
Coming out neurologically
Media representations of autistics & other different-brained persons
Micropublishing & Small Business

Subjects & Ideas/More

The Death of the Common Good in the US:***
The System: the many systems & institutions each & all making survival a crapshoot
Combat veterans & PTSD
GLBT civil rights
Criminal Justice Reform
Immigration
Social Justice
Religious Hubris

Interests & Themes (besides the above)

Creative nonfiction~~fine art crafts~~Nelson, Lancs. England (my birthplace)~~Pendle & Pendle Hill~~ Achill Island, Co. Mayo, Ireland (mum's bp)~~the MV Britannic (the ship we set sail from Liverpool on, April 1957)~~immigration to the States, the experience of~~In America~~Harvey Milk~~aerobic dancing~~West Side Story~~David Sedaris~~Ricky Gervais~~important people in my life who have died~~major depression (personal)~~ADHD (personal)~~real estate listings~~Asperger, autism, autism spectrum disorder (personal)~~Brian Wilson's Smile~~Marygrove College~~nuns & former nuns~~rhetoric of writing~~clip art, fonts & publication design~~Flight of the Conchords~~the memory of the perfect presidential candidate, Julian Bond~~architecture~~documentary film~~all girl schools~~Amarcord~~spells, good & bad~~ fiber art & textiles~~Amelie~~poetry, mostly mine + the moderns, especially Dylan Thomas & especially "Fern Hill"~~art & artists~~geriatric cats~~cryptic crosswords~~IKEA~~community colleges~~Southwest Arts & Crafts Center (Ursuline campus) in San Antonio~~"The Daily Show"~~cats~~Fidji cologne~~the prose style of movie critic Pauline Kael~~teaching (personal)~~Citroen 2cv~~the other Citroen you see in all the French spy movies (the one with adjustable hydraulics)~~Dead Like Me~~the Lake Erie shore off Cleveland~~ Tulsa (mostly north of E 41st St)~~Carytown in Richmond VA~~Detroit!~~dressmaking & design~~breathtaking things~~people I can't bear because they think stupidly when thinking smartly is just as easy~~house & home decor/improvement shows & wedding shows on cable~~brick houses--cottages, tudors, craftsmans--built in the US in the 1920s before the Depression~~Law & Order: Criminal Intent~~egg cups~~a perfect steak~~a perfect gin & tonic~~a perfect cup of tea with milk in a bone china cup, served with, with, with a napoleon or a cream puff or an eclair or a cannoli or egg custard or all of those things in one go~~Earl Grey tea with Lavender~~Lavender~~archetypes~~Leonard Cohen's songs~~T. Berry Brazelton, MD~~transactional analysis~~liturgy~~cream of tomato soup~~seafood~~coastal California, probably especially Monterey~~the late British novelist, Paul Scott~~choral singing~~writing style~~knowing what became of old friends & others once significant in my life~~British Invasion~~making distinctions~~brilliantly designed gadgets (e.g., the rotary hand mixer)~~the 1958 Plymouth~~Morris Minors~~Marshall McLuhan~~Ovaltine~~tropical pastel colors: lime, aqua, orchid, periwinkle, lemon~~getting and (too seldom) writing letters~~Free Speech TV~~Motown~~going abroad~~gardening~~weird islands where people live, like Tristan da Cunha, St. Pierre et Michelon,the Aleutians, the Falklands, Saint Helena, and at least 500 more...and more?

Stay tuned.

All the best,

jEAn

*** Until January 20, 1981, people across party, ethnic, regional, or religious lines took for granted the ethical principle of the common good, expressed in taxation for a vital public sector. After that date taxation was your money being taken by the government <--? (aka "Those bureaucrats in Washington"<--?) Entire generations have now emerged with no exposure to the principle of the common good, as an American value as well as the force behind our institutions.