We shall board our imagined ship and wildly sail/Among sacred islands of the mad till death/Shatters the fabulous stars and makes us real

When my family went to visit Rochester this past spring, we drove past a huge old brick building that had obviously been vacant for quite some time.  “What is THAT?” my husband wondered.  “That’s an old insane asylum,” I told him flatly.  I was quite confident, and I was right.  I know what those things look like.  There was one on the street where I grew up.

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When I was an adolescent struggling with mental illness, I found the abandoned towers of the Buffalo State Asylum for the Insane both haunting and troubling.  I was never in any real danger of being institutionalized myself — for one thing, “institutionalization” the way it was practiced until the latter half of the 20th century simply does not exist anymore.  There was a brief passing threat that I might need to be hospitalized in the short term at a small inpatient facility, one with more modern methods, but also one where, as the ER doc informed me solemnly, “they do electroshock therapy.”  That put the fear in me pretty quickly.  I have a bad habit of wallowing in media that I know will upset me, so at that point I had read One Flew Over the Cuckoo’s Nest, The Bell Jar, Girl Interrupted…even thought I knew intellectually that a stay at the small clinic wouldn’t leave me lobotomized like Randle McMurphy, I also knew I didn’t want to take that chance.

The towers have been long since abandoned, but there is still a psychiatric hospital on the grounds near the old asylum.  The summer after my first year in college, I worked at a gas station across the street, and our clientele was largely composed of inpatients with day passes.  They were a colorful crew, all of whom had earned mildly humerous nicknames from the Stop-N-Go veterans.  They came in all day long, buying cigarettes, coffee, hot dogs, beer.  They had day passes, but nowhere to actually go during the day.  So they wandered up and down the street, hung out in our parking lot, mumbled to themselves, and drank.  There was one gentleman who my co-workers had dubbed “Rod”, because his feathered blond hair lent him a vague resemblance to Rod Stewart…if Rod Stewart was made entirely out of sandblasted leather and wore a torn-up denim tuxedo rather than flashy blazers and leggings. Rod would come in about four or five times throughout the say and buy 40 ounces of King Cobra malt liquor in a paper bag.  One day Rod came in to buy probably his third 40 of the day, and as I rang him up, he leaned forward and whispered conspiratorially, “You know, they’re all crazy over there.”

Mildly taken aback, I just smiled at him politely.  “Yeah?”

He nodded, and then added, “After a while it starts to rub off on you.”  He looked rueful for a moment, then turned and walked out the door as the Backstreet Boys crooned over the sound system.

“But I don’t want to go among mad people,” Alice remarked.
“Oh, you can’t help that,” said the Cat.  “We’re all mad here.  I’m mad.  You’re mad.”
“How do you know I’m mad?” said Alice.
“You must be,” said the Cat, “otherwise you wouldn’t have come here.
-Lewis Carroll

 

When my father was a child, he also lived near the asylum.  He and his cousin would ride their bikes past it after school, and the patients would be at their windows, shouting lurid things at them through the bars.  Hearing that story as a kid left me aghast.  It sounded so Dickensian somehow.  Mental patients hissing vulgarities at children from their cells.  Every time I drove by, I would hear the hissing in my head.  It felt uncomfortably real.

As an adult, my dad had a friend who worked at the asylum.  In a recent email, he described it thus:

“While I was waiting for my…friend to be available so we could go to lunch, I overheard my first schizophrenic conversation between an aid and a patient.  The striking this was that he kept repeating the same tape or gambit over and over.  And the aid had no other option but to put up with it and play her part over and over.

When I read this, I felt a chill.  Because it was immediately apparent to me that the patient in question wasn’t just schizophrenic.  He was autistic.  Because people with autism were often diagnosed with “childhood schizophrenia” (a diagnosis, by the way, that is almost unheard of to this day, to the extent that one girl with the diagnosis, Jani Schofield, has been making the talk show rounds like a carnival side show for half a decade now) and put in asylums.  That’s what we used to do with disabled children.  We locked them away.  Kids with autism, kids with Down Syndrome.  Doctors told their parents these children were hopeless cases. Temple Grandin’s parents were told to insitutionalize her.  Daryl Hannah’s parents were told to institutionalize her.  They were not to be seen.  They were not to be spoken of.

The great wave of deinstitutionalization in this country began with the one-two punch of the publication of Cuckoo’s Nest in 1962 and the Community Mental Health act passed in 1963 by President Kennedy.  Kennedy understood the state of mental health care better than most — his younger sister, Rosemary, was lobotomized and institutionalized for relatively shady reasons.  She had a low IQ and grew volatile and disobedient as a young woman.  By the age of 23, her father unilaterally decided that she needed radical treatment. The doctor who performed the procedure would “ask her to recite the Lord’s Prayer or sing God Bless America.

“We went through the top of her head.  I think she was awake.  She had a mild tranquilizer.  We made an estimate on how far to cut based on how she responded.  When she began to become incoherent. we stopped.”

Men reaching out past the bars. Autistics scripting endlessly to bored orderlies.  After a while, it starts to rub off on you.

“The thing that I have understood is that madness entails no obligations.  There’s no need to kill people in order to prove to them that you are insane.  They know it already.”
-Carl Solomon

 

“Carl Solomon!  I’m with you in Rockland
where you must feel very strange…
I’m with you in Rockland
where the faculties of the skull no longer admit
the worms of the senses
I’m with you in Rockland
where you scream in a straightjacket that you’re
losing the game of the actual ping pong of the abyss 
I’m with you in Rockland
Where you bang on the catatonic piano the soul
is innocent and immortal it should never die
ungodly in an armed madhouse.
I’m with you in Rockland
where fifty more shocks will never return your
soul to its body again from its pilgrimage to a
cross in the void.”
-Allan Ginsburg

 

We don’t really have institutions anymore.  The schizophrenics and manic depressives are in and out of prison instead.  People struggle through the waking world disguised in a cloak provided courtesy of Pfizer and Blue Cross Blue Shield, where we can quietly refill prescriptions and hide in plain sight.  Autistic children are integrated in mainstream classrooms, triggering horrified queries about the rising rates.  1 in 88.  Where did they all come from?  Where were they before?

They were in the institutions.  The ones that are slowly but surely being turned into luxury hotellike the one in Buffalo, on the street where I grew up. I am glad for continuing urban revitalization in my hometown, but I would rather spend a winter at the Overlook with Jack Torrance that spend a single night at the Richardson Olmsted Complex with the voice of a thousand McMurphys hissing in my brain.  Because after a while, it starts to rub off on you.

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“It’s the sound of the unlocking and the lift away / Your love will be / Safe with me”

He recognizes my footfall. He can be awake in his crib for an hour, resting peacefully through absolute cacophony upstairs, but the moment he hears me walk across the floorboards in the living room above his head, he cries out.

I once remarked that he hugs me like he’s Princess Leia and I’m Han Solo and I’m about to be frozen in carbonite and he doesn’t know if he’ll ever see me alive again. On more than one occasion I have joked, when he grabs me by the legs or snuggles into my lap, that he needs to learn he can’t climb back inside me.

About a month and a half ago, he broke my glasses. He’d gotten into the annoying habit of slapping them off my face as I loaded him into his car seat. He really wanted those glasses off of me. He would then look at me fondly and caress my cheek, as though he hadn’t seen my face, my real face, in ages. I think it was a weaning thing. When he nursed, even when he was a very small baby, he wanted to make constant eye contact. Gazing at me in wonder.

I don’t think anyone in the world has ever loved me as much as he does.

I am constantly afraid that something horrible is going to happen to him. A freak accident, when he’s just out of my sight. Awful scenarios, running through my head, all the time. I read the Phillippa Gregory book “The White Queen” last week, and the closer I got to the ending I knew was inevitable, that the queen’s sons would be taken to the Tower of London and never come back out, the more white-knuckled my grasp of the library binding became. My New Year’s resolution this year (and I never make resolutions, so this was big for me) was to stop reading things on the internet that would upset me. True crime, houses burning down with children inside them, longreads about child pornography sting operations. And yet somehow last night I found myself reading the Ted Bundy wikipedia page, half-convinced that there was a serial killer downstairs silently strangling my children and on his way to kill me too. I don’t know if this is normal. I kinda assume that it is and it isn’t. All I know is that I love my children far more than I love myself and I live in constant terror of something horrible happening to them.

So I just don’t understand.

I understand why people, in the comments of some articles I have been unable to pull myself away from of late, want to offer up some small bit of empathy or sympathy to a mother who feels pushed to the breaking point, who feels alone, without support, without hope. I get why people want desperately to create some sort of context, to help prevent, to try to understand.

But I will never understand.

I will never understand how someone could try to kill their child.

I can empathize with Dorothy Spourdalakis right up until she gave her son sleeping pills and then stabbed him in the heart.

I can empathize with Kelli Stapleton right up until she lights the grills in the back of her van.

And then my empathy is gone. And then my compassion disappears.

My son is not autistic, but my daughter is. The emotional abundance I receive from E is not as readily accessible from D a lot of the time. But I have no doubt she loves me. She is able to show me that, through words and deeds. She always has. I don’t know enough about Alex Spourdalakis or Issy Stapleton to speak to their capacity to express connection with their parents. All I know is what the media narratives tell me. They were large, and violent. They were locked in, in their own worlds, a burden. Nevermind reports, firsthand reports I’ve read, from people who have met these kids, seen them talk, seen them play. I do not doubt that these children were more difficult to deal with, on many levels, than my own. But they are your children. They trust you, completely, inherently, from birth. Your job as a parent, more than anything else, is to love and protect your children. Their lives are not yours to dictate. You have no right to decide when and how they will die. When the language we, as a society, use to describe autistic people is language that is othering, dehumanizing, we set up a stage for this to keep happening. When you see your children as a burden, as a curse, as people trapped inside a shell of an illness, as props in your play…that’s the only way I can understand such acts. And with that I cannot, will not, empathize.

When D was a baby, I was shellshocked. I felt an immediate connection with her when she was first placed on my chest, but in the weeks that followed I felt that connection crumble. She was a voracious nurser, wanted to eat constantly, wouldn’t sleep anywhere that wasn’t a lap or a shoulder or a busom. But she wouldn’t tolerate a wrap or a carrier. When I tried to strap her to me so I could accomplish something, anything, she wrestled against me and screamed. Once we got her on some reflux medicine, things got better. But there was still a constant struggle within her that I could perpetually see — her desire to be close to me, so I could nourish her, but simultaneously shuddering and clawing away from confinement. The fervent and almost obsequious love that my son showers me with…it’s not the same as what D and I have. The summer before he was born was a nonstop struggle to come to some sort of detente with her. We screamed. We cried. We hurt each other. I didn’t know what was wrong between us, but despite our epic rows I clung to her. A few days before E’s birth I crawled into bed next to her and we held each other close. I knew it was the last time it would be just me and her together, alone together, as we had been so often for so long. She is my first child. She frustrates me endlessly. She makes me proud every day. A phrase I have seen very often on autism self-advocacy blogs is “Behavior Is Communication”. When D does things that are violent or aggravating or disruptive, I need to stop myself from simply responding to the behavior and instead try to deduce what has led her to that behavior.

Why was Alex Spourdalakis violent? Was it because his mother was subjecting him to biomedical “cure” treatments recommended by her friends Andrew Wakefield and Polly Tommey? Was his gastrointestinal pain a result of bleach enemas? Chelation? I expect we will find out at the trial. But he was trying to tell his mother something.

I will never understand.

Why was Issy Stapleton violent? Was it her reaction against endless behavioral therapies aimed at stopping problematic behaviors rather than understanding what she was trying to communicate? Was it a reaction against a mother that clearly had some need for drama, a mother who posted videos on YouTube of herself weeping and screaming as her daughter comes at her? Trying to tell her mother something.

I will never understand.

Your child is not a bit player in your own personal psychodrama. Your child is not a puzzle waiting to be solved. Your child is a gift, a miracle in every cell of his or her body, even if that body is in some way different from what you expected, what you always thought you wanted in a child. Your child is new and unfinished and essentially defenseless against you. Yes, even a 14-year-old autistic child who outweighs you. You are the parent. You always have options — not always good options, but options. Options better than killing your child who trusts you, who needs you, who is struggling and needs your love and your guidance, not your disappointment and disdain and despair.

I think it is an insult to my friends who are parents to autistic children who fall on the more “severe” end of the spectrum to express sympathy for these women. Thousands of parents are raising children who are very similar to Issy Stapleton and Alex Spourdalakis and would never dream of murdering their kids. We can and should have a discussion as a society about lack of services, lack of supports — but can we please do it independently of the conversation about murdering children? Kelli Stapleton had total strangers on the internet donate money, enough money to send Issy to a residential therapy program for six months. Dorothy Spourdalakis had people from Age of Autism filming in her kid’s hospital room; Andrew fucking Wakefield at his bedside. These were NOT women who were toiling away anonymously, penniless, without any resources or supports.

As a parent, it has been relatively easy for me to find blogs of other parents where we can offer each other support, to find accounts in the media that promote sympathy and understanding towards parents of children with autism. I agree that in our day to day, non-internet life, it can be hard to find the support we need. But the overall narrative in the media is one that gives parents a voice. Conversely, I have found it is extremely rare to find blogs or articles that are written from the point of view of autistic adults. Really. It wasn’t until I found Shannon Des Roches Rosa’s blog (through a search about iPad apps, of all things) that I was introduced to the voices of autistic adults from all points along the spectrum, from Ari Ne’eman at the “high-functioning” end to Amy Sequenzia at the so-called “low-functioning” end. So many parents of autistic children believe that organizations like the Autistic Self-Advocacy Network are made up solely of Aspies who don’t represent their non-verbal or aggressive child. They are WRONG, and the reason they are wrong is because they simply haven’t seen it, seen what their children are possibly capable of as adults. People like Kelli Stapleton and Dorothy Spourdalakis see their children’s autism as a life sentence, not only for their children but for themselves. Of course that makes them depressed and anxious, and in some cases, in people who already have their own issues to deal with, personality disorders, whatever it may be…they snap. And what ASAN and other adult autistic advocates and even many parents like myself are trying to express is that we cannot offer our sympathies to those people who snap, because their actions do nothing but perpetuate the currently rampant idea that autism is an unbearable curse for parents and children. That devalues and dehumanizes autistic people. The most common response to these tragedies, it seems, is to focus on the experience of the parent, try to find what possibly triggers their murderous behaviors. I think it’s more important to change the focus from the parents to the children, emphasizing how our society’s general perspective on autistic children is a dehumanizing gaze that is so pervasive that it warps how many parents view their own children. As a parent, I struggle, every day. But I have to always keep in mind that my daughter is struggling more than I am, and do everything I can to help her through. And part of that is refusing to support a media narrative that says I deserve a voice but my child doesn’t.

My son just turned two, and he doesn’t talk much. It’s frustrating, and ironic, to have had a daughter who is autistic and couldn’t stop talking for a million dollars, and a son who, from all available evidence, is not autistic but is just a big ol’ mushmouth. But one of the things he can say is, “I love you”. It doesn’t sound like “I love you.” It sounds kinda like, “N’doo.” But he says it to me every morning when I get him out of his crib. I speak his language. I hear his voice.

“And at times the fact of his absence will hit you like a blow to the chest, and you will weep.”

Aside

When I was in middle school, my mom received a delightful invitation one day from a family friend.  Richard Lee was going to be consulting on a case for the Buffalo Zoo; there was a newborn giraffe who had something wrong with one of its four stomachs (fun fact: giraffes have four stomachs!), and he thought maybe I would like to tag along.  I’m not sure what made him think of me.  Maybe he knew I needed a small infusion of whimsy in my life.  But I do know that, because of Dick Lee, I ended up in a cage with the most amazing animal I’ve ever had the opportunity to touch, getting licked by its enormous sticky purple tongue.

I remember thinking, at the time, “Why is Dr. Lee working at the zoo?” I was under the impression that he was an OB-GYN. I’d been to his office at Children’s Hospital.  But it turned out that Dick Lee had a resume longer than my arm.  According to this exhaustive interview, he was Director of Medical Clinics and the Primary Care Center at Yale, as well as chief of General Medicine.  Then he was vice-chairman of the Department of Medicine at SUNY Buffalo, while also chief of medical services at the VA.  Then he became head of the Department of Medicine at Children’s Hospital, Chief of Maternal and Adolescent Medicine and the Division of Geographic Medicine at UB, professor of anthropology, professor of social and preventative medicine, professor of pediatrics, chief medical officer at the WHO Center for Wealth in Housing, medical director of something called Ecology and Environment, Inc., and, yes, consultant in Internal Medicine at the Buffalo Zoological Society.  He was also one of the smartest, funniest, kindest and most captivating human beings I have ever had the immeasurable pleasure to know.

And yesterday, he died of a heart attack.

I was talking to a friend recently about how ages that seemed old when we were children don’t seem old now.  Obviously this is mainly due to a change in perspective as you yourself age, but I think it’s also due to men like Dick Lee.  When I told my husband that my parents’ friend had died, out of the blue, he asked how old Dick had been.  I told him 75 or 76, something like that.  “Well, then it wasn’t REALLY out of the blue.  I mean, he was 75.” But Dick somehow seemed ageless. I hadn’t seen him a couple years, I suppose, but the last time I did see him he was as vibrant and vital as he had ever been in all the time I knew him.

I met Dick when I was 7.  I had already known of his son, Ben, who was a year ahead of my sister in school and had given indelible performances in their productions of M*A*S*H, The Music Man, and The Man Who Came to Dinner. Ben was always much nicer than he really had to be to the kid who showed up backstage at her sister’s plays and gazed at him in awe.  But then I met Ben’s parents and realize that he simply came from very very good stock.

My dad got to know Dick when he helped facilitate an exchange program between Nichols and a boarding school called Loretto, in Scotland, which Dick had attended briefly as a teenager.  The teacher who came to Buffalo from Loretto, Peter Wood, became a great friend and colleague to my father, and he began coming to dinners at our house.  Soon, Dick and Susan Lee began coming along.  And that summer, we were invited to our first of many gatherings at the Lees’ house.

The Lees lived out in the country, on an expansive property called Many Barn Farm.  The name was apt.  As a kid, my favorite barn was, understandably, the stable, where they rented out stalls, and where I took one of the two horseback rides I’ve ever gone on in my life.  (Both were before the age of 10. It’s been a slow 20 years, horse-wise.)  Another barn was converted in the ‘90s into a guest house and library.  I remember Dick and Susan being very eager to show off the renovations to my parents and me once they were complete.  They envisioned holding salons there, gatherings on cold winter nights in the large library loft with a selection of the most interesting people Buffalo had to offer, where they could trade ideas and drink wine.

But every party at the Lees’ house was essentially a salon.  A salon with swimming, and volleyball, and kebobs.  Dick had, over the years, curated a collection of friends who were smart and funny and very occasionally skirted the line of pretentiousness, but regardless a fabulous array of individuals for me to be exposed to at a young age.  I didn’t really appreciate that exposure until I was quite a bit older.  When I was young, I used to spend much of the time at their parties exploring the house, which was crammed to the rafters with books and papers and maps and globes and relics and an enormous tiger skin rug that I would lie on and read the old magazines (mainly Harvard Lampoons, if I recall correctly) that I had scavenged out of his older son’s bedroom, because the actual books in the house were all too intimidating for me to touch.  Dick Lee seemed to ingest information whole, absorb it through his skin.  He knew everything and somehow wanted to learn more.  He was among the most well-read people I have ever met.

He was also one of the kindest, and almost certainly the most benevolent.  He spent his summers for years and years taking students as young as 14 on medical treks to Ladakh, a remote mountainous area in Kashmir, where they would help treat infections, administer vaccines, and care for pregnant women and their children.  He apparently took similar trips to Brazil and Kenya.  He spent much of his residency in rural Montana, doing housecalls for families in the middle of nowhere and then working on a reservation.  He managed to combine his drive for adventure and thirst for knowledge with a relentless do-goodery that touched thousands of patients over 50 years of practice.

And he somehow managed to take the time out three months ago to respond almost immediately when I sent him an email about my health concerns.  He provided some clarification about auto-antibody tests and reassured me that it was certainly possible to have positive results on those tests and never develop full-blown symptoms of lupus or Sjogren’s. (He also followed up with my mother a few weeks ago to see if I’d gotten any answers from my rheumatologist visit, and just to express general concern.)  I look at our email correspondence and feel, as my mom put it yesterday, bereft.  It doesn’t make sense.  How could he have just been here, and then, in a moment, gone?  I listened to a radio interview last night that he and Ben did a couple years back, discussing his discovery of their hidden Chinese heritage, and I just smiled hearing his voice.  His voice that was alternately calm, clear and wise, or else boisterous, rollicking, Shakespearean.  I can’t imagine never hearing it again.  The world is richer for him having been here, and poorer now that he is gone.