For the past couple of weeks, I’ve been wondering what story to tell for my landmark post. Finally, I realized that the decision had already been made, as this story has been demanding to be told over and over again.
Who am I to argue with my inner voices?
My stories tend to reflect both my life and my thought processes. Linearity is not one of the major themes in my life. Peter Knoblock, my advisor as a masters student, gifted me with the term “divergent thinker” – “divergent” tends to characterize my life and stories like this as well.
In 1990, the movie Awakenings came out. I was on break between semesters in the Special Ed masters program at Syracuse University and staying with my parents. I talked my mom into going to see the movie with me.
(FIRST SPOILER WARNING – Awakenings is a fictional retelling of the dramatic, but short-lived response of a group of patients to a drug. After having contracted encephalitis lethargica in the late 1920s, many patients like these fell ill years after they apparently recovered. All were very severely limited in movement and the ability to express themselves – some gave little sign they were aware of what was going on most of the time.)
My mom and I go and settle into seats toward the back of the theater. Within a few minutes a group of people comes in. Looking over my shoulder, it’s obvious the group is a bunch of people with developmental disabilities. Nothing about the appearance of the people with disabilities causes me to come to this conclusion. No – it’s the behavior of the person who is clearly the staff person. He’s into “shepherding behavior,” attempting to control the movements of the adults he’s with. At the end of the line of “clients,” or whatever the staff person is calling them these days, is one guy, middle-aged, who is hanging back a bit. As the rest of the people with him file into the row behind us, he makes a break and sits himself down into the seat beside me.
I smile. I appreciate acts of resistance, especially skilled acts of resistance.
The staff person tries to get him to move back with the group, but talking won’t do it. I figure one thing he might be worried about is how I feel about it. It's not like everyone rolls out the welcome mat for people with developmental disabilities. I look at the staff guy and shrug, saying “he’s cool.”
Staff person gives up and sits back with the rest of his charges.
I get ready for the movie. My mom is on my right and the escape artist is on my left.
(SPOILER WARNINGS – ELEMENTS OF THE MOVIE ARE INTEGRAL PARTS OF WHAT FOLLOWS)
It’s not too long into the movie before I’m not as amused by the person on my left as I was when he first sat down. He mutters a little at points, but I am pretty good at tuning that out. Actually, some of his friends in the row behind me are muttering, too. Some of them seem to be distressed over the scenes of large-scale institutional living. I wonder how many of them lived in one at some point. It’s a safe bet it’s not a pleasant memory for anyone who did.
But at one point, a printed form held by one of the characters appears on the screen and the guy in my row asks me what it says. Annoyed, I tell him to be quiet and listen to the movie.
He says, in a very small voice, “I can’t read.”
I am suddenly very deeply ashamed. I'm reminded once again what a turd I can be. It’s a small thing this man needs and my tone obviously didn’t help him feel any better about the need for asking.
I decide I’m in need of an attitude adjustment. I summarize what’s on the form in question. Any time there’s print involved, I lean over and quietly give him an explanation. He, in turn, becomes a very quiet spectator of the film.
(My mom has caught some of this and threw me a questioning look. I signal things are fine and that I’ll explain later.)
I already know the basic outline of the story when I watch it. I read “The Man Who Mistook His Wife For a Hat” by Oliver Sacks years before this, and the events in the movie were alluded to there.
There are other things I wasn’t prepared for.
I wasn’t prepared for how familiar Leonard, played by Robert DeNiro, would feel. It’s not that I have Parkinson’s, but I have enough common ground in my nervous system with the issues that I can physically and emotionally identify with the “patients” depicted in the movie. The same isn’t true of other conditions. At different phases of Leonard’s emergence and decline, I get to witness parts of my present and strong possibilities of my future. (I was prepared for it intellectually. By virtue of one of many coincidences in my life, the preceding 3 months had been spent developing an understanding of what neuromotor issues were and how they mine were different from those of most people.)
I wasn’t prepared for how familiar Robin Williams’ character would be on a personal level. (Important note – at this point in my life, I’d been working as a staff person in one setting or another for people with developmental disabilities for over ten years.) At the moment, I was living comfortably, happily and monkishly in the masters program in Special Ed at Syracuse University. I was great with students, clients, and in a structured setting. Anywhere else I was at a total loss.
Where am I going with that? Let me put it this way. The teacher who supervised my student teaching had this to say after seeing the movie: “No wonder you liked it. The doctor in it is you.”
He means it – he’s seen me, for example, come to the realization that one of our labeled students has a reading vocabulary far more extensive than the 10-20 his records say. This is based on watching the student doodle, much of it words. Making my own flash cards, testing for five minutes at a time over a week, I determine the kid has at least 150 words he can read – probably more, since I only mark as “correct” the first thing that comes out of his mouth. (He makes errors that are very interesting as well.)Further, I can use that vocabulary, give him written sentences, and have him answer questions about them. (I’d learn a few years later, that all this ability would be ignored again. When it’s my turn to supervise student teachers at a middle school, I run into the student again. Somehow, the potential for working with his reading got lost in the intervening years.)
But the my own supervising teacher also notices something similar about the social ineptitude of both the Robin Williams character and myself – outside of anything task oriented. (He doesn't say this, but it's too painfully clear for me to miss.)
And the memories! Too many to recount, so I’ll stick to one. A few years previously, I worked in a “day treatment center.” One of the people in my room was an Italian man in his 60s, who I’ll call Dom. Most of the day, he did little but leaf through phone books, although we tried to get him interested in other stuff. One day a coworker brought in a record with Italian Opera on it. At some point, Dom dropped his book, got a huge smile on his face, and scooted himself and his wheelchair over to the record player, arms outstretched. We were all stunned. The music ended soon after he got there. He returned to his normal stern expression and phonebook leafing. No new interest in the record when we started it again. We brought in other Italian music. Nothing. But we couldn’t forget the flash of something else we saw for a fleeting minute – and knew that it was there all the time, and waiting to be reached again. Not that we were successful.
By the end of the movie, as anyone who is seen it knows, the “awakening” of the patients in Sacks’s story is as short as it is dramatic. A lot of people in the theater are in tears.
I am, too. But maybe not for the same reason that most of the others are.
Most watching the movie, I think, are stuck on the failed miracle – the images of the awakened sleepers returned to expressionless, stiff, nonresponsive entities.
I’m crying over something else. In the final scenes, Robin Williams’ character is giving an address to staff in which he summarizes the experience and talks about adjusting to “the reality of miracles.” At this point, the visual images shift to the patients, who, though nonresponsive, are being read to, fussed over, and treated as the same people they were when the drug was working.
The voiceover, from Robin Williams:
As the chemical window closed, another awakening took place. That the human spirit is more powerful than any drug and that is what needs to be nourished.
I’m crying for a world that doesn’t exist. I don’t know how things went in the real-life hospital where Oliver Sacks worked, but in most of the places I’ve been, this isn’t how it works. Nonresponsiveness is seen as “no one home,” and the treatment of such people starts to follow accordingly. They don’t get talked to. They get talked about in their presence. People hold discussions with each other while ignoring them. For all intents and purposes, they cease to exist. How do I know? I’ve seen people do it. Worse, I’ve been one of those people treating a person as some kind of object.
At the end of the film, the guy on my left gets up and goes. Meanwhile, there is more, while the last of Randy Newman’s beautiful score plays. A little about what happened to the patients and to the “real life” Doctor Sayers. Just before the credits start to roll, there is a replay of a scene of Robin Williams with DeNiro, before the drug intervention. Williams’ hands are poised over DeNiro’s as they sit on a pointer on a ouija board. Williams says: “Let’s begin.” The picture fades and the credits roll.
A fine landmark. So the guy next to you just got up and left after you made the effort to accommodate him? How does that feel to not have your efforts acknowledged? How do people who help folks with disabilities keep themselves motivated when so much of what they do is not acknowledged (at least not immediately)?
Based on my silly question, I guess you can tell that I've never had children.
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quote:A fine landmark. So the guy next to you just got up and left after you made the effort to accommodate him? How does that feel to not have your efforts acknowledged? How do people who help folks with disabilities keep themselves motivated when so much of what they do is not acknowledged (at least not immediately)?
First, I was too caught up in my own emotions to care about the guy's lack of a thank you - who knows what emotions he was dealing with on his own? Besides, the staff person was doing his shepherding thing, which my seatmate cooperated with this time.
Second, if I'm an individual just helping someone out, sure, it's nice to be thanked. Sometimes it doesn't happen - rudeness and carelessness are pretty evenly spread character traits - across the total population.
Third, if you're paid to help people, you really shouldn't be expecting people to say thank you for what you're doing for pay. People still do - more than they should, in my personal experience. But I think paid staff people who get miffed about not getting thanked for doing their job need to change their attitudes or their jobs.
How beautiful. The kind of respect you give to people is the truest good work, with no hope of a gain of any sort. You have, however, received many gifts.
Your gain will come later, when you can still see the bright eyes of a soul breaking out of their world and connecting with yours.
I can still see the sliding smile on the little boy in the wheelchair on Mister Rogers' show. How they sat there and had a real chat. Did you ever see that episode? It appears on any good Mister R documentary. Years later, when the boy grew up, he came to an award ceremony. He came out on stage, and Mister Rogers leapt onto the stage and embraced him.
Sounds a bit cheesey, maybe... But you're what I want to be when I grow up and find a "real job." I was already being nudged in that direction, and I think this post clinched it. Thank you.
*all choked up*
I lived in a l'Arche community for eight months. And I saw all the "shepherd" reactions in other community-living settings, but they took such care to stress the personness of each of the core members. Even the lady who had no reactions to offer other than the rare smile and the more usual grimace was offered such respect; the whole experience changed my life (but I'll save that for my own landmark. )
quote:(I’d learn a few years later, that all this ability would be ignored again. When it’s my turn to supervise student teachers at a middle school, I run into the student again. Somehow, the potential for working with his reading got lost in the intervening years.)
Just... GAK. *sigh* Stories like that make me want to hurt people.
That was truly inspiring. I don't know what to say that wouldn't sound cheesy, overdone, or downright silly, but that was incredibly moving. People like you give me hope, and something to aim for. Thank you for that.
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Now I want to see "Awakenings" again, I don't think that I got the maximum effect.
Stephen, you restore hope for me. I don't have a lot of experience with 'differently abled' folks, but I hope that what contact I have with others (ALL others) is tinged with the kind of respect you exhibit.
And post more often, please. I think you have valuable things to say. And thank you. Wow.
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Thanks sndrake. I love these kinds of posts which leave me a little more informed and give me different perceptions / experiences to consider and think about.
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Thanks to everyone - everyone who has posted in this thread has been very kind and generous.
ClaudiaTherese, ditto and now it's my turn to feel guilty because I owe you email.
Jenny, thanks for the tears. I understand them, I think. This particular movie can move me to tears no matter how many times I watch it. But it's not just the movie that moves me to tears.
Elizabeth, I was too old for Mr. Rogers and missed the part you're talking about. Everything I've heard about Fred Rogers says he was a class act. And I think he included kids with disabilities in his show on a regular basis over time.
dkw, I promise to post long ones no more than "once in awhile."
Eaquae Legit, L'Arche might be one of the rare exceptions to the cold service model out there. I've heard good things about them and keep meaning to go to an open house at the Chicago chapter here. (About the student whose reading was lost in the wastebin - it's especially sad since he had limited expressive verbal ability. A lot of canned speech, and didn't seem to hold verbal info in his head very well. Exploring the written mode of communication would have been very valuable for him - and could have opened him up to new opportunities.)
Rain, be careful what you ask for - I might deliver.
I can safely say that just about everyone who has replied saying I add to Hatrack is seen the same way by me.
Thank you everyone! More later, if there's more to say.
Beautiful and deeply touching. I have two close relatives who are mentally retarded, one in his 50s and the other in his teens.
But where this touched me the heaviest was in thinking of my Grandfather who passed away last November. Over the last few years of his life, he had suffered one mini-stroke after another until he could barely function on his own. He struggled to talk and walk, and barely fed himself. Something that had to be soul-grating to a man who had prided himself on his keen intellect.
Near the end, before he entered a nursing home, my grandmother and aunts had given up trying to communicate with him. They brought him along everywhere rather than leave him alone, but spoke around him as if he was not there. While visiting once, I heard them talking about him as he sat at the table with them, and they spoke as if he were no more than a house plant. My eye caught his and I could tell that he could and did understand what was going on.
I lost it and basically ended up talking down to each of them explaining that this wasn't the case of someone with the porchlights on and nobody home. It was a case of the porchlights on and someone be trapped in a back, back bedroom with all of the doors shut. After that, I left to never return until it was time for him to pass away, it was just too hard for me and I knew things weren't changing for him.
SN, I've got to say, you have more in you than I ever will have. What I stood up for once, you make your daily stand. I am both humbled and inspired by you and your strength.
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All the good words have already been used. I've never been good at interacting with people who aren't remotely near my level of...intellect, maturity, whatever. I don't even babysit because I don't relate well with "normal" children. I've always admired people who are not intimidated by disability, though, and you are no exception. Thank you for being you.
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I really don't know if I'd be able to take that movie. My grandmother, father and sister all suffer from Parkinson's. I'm intimately familiar with how it affects a person, and not just the terrible ways. That being said, if you're suffering from something similar my heart goes out to you.
Great landmark, I've always had a good time reading your posts. And hey, bioethics floats my boat too
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Wow, thanks everyone. I'm going to try to reply to people as I get time over the next day or two. Roughly in order.
What a sad and infuriating story. The hardest things to deal with are the ones in which all we can do is bear witness, being unable to affect the overall situation.
quote:SN, I've got to say, you have more in you than I ever will have. What I stood up for once, you make your daily stand. I am both humbled and inspired by you and your strength.
Thanks, but remember, I don't do this alone. Somewhere between the end of 1990 and now, I found whatever combination of skills it took to work with people - sometimes groups of them. (And, to be honest, sometimes the "working with groups" part makes me ) It's always easier to make a stand with people at your side than when you're by yourself.
It's also different when it's as intensely personal as it was with your grandfather and the people your were in conflict with. Thank you for sharing that - I am so very sorry for both you and your grandfather.
Just a little addendum on the story. About two years later, I corresponded with Sacks after tracking down his address and having a good excuse to do so.
It had to do with an incredibly lucky find, an obscure book I found. The story and background of the book is interesting in itself. Here's what I wrote on another website:
quote:Behind the Door of Delusion was published in 1932. Its author called himself only "Inmate, Ward 8."
"Inmate, Ward 8" was Marion Marle Woodson. Born in 1883, Woodson came from a prominent family in Oklahoma. His wide-ranging career included heading the Oklahoma Department of Agriculture and serving as president of the Connell State School of Agriculture in Helena, Oklahoma. He was a reporter and editorial writer at the Tulsa World and Tulsa Tribune, as well as a foreign correspondent for the Associated Press. He held a private pilot's license.
By his own account, Woodson had struggled for years with "dipsomania" -- what we would now refer to as advanced alcoholism. The drinking bout that preceded his commitment involved ingestion of paraldehyde and a "bromide solution" (probably potassium bromide). When he was found by a friend, Woodson was delirious. He spent two weeks hospitalized, on the verge of death.
It wasn't hard for friends to convince him that "confinement" for a year or more was his only hope of freeing himself from his compulsion He was admitted to Eastern State Hospital in Vinita, Oklahoma -- the route a fair number of alcoholics took in those days. (It wasn't until 1935 that Bill W. and Doctor Bob S. met and formed Alcoholics Anonymous, a grassroots self-help program that enabled people like Woodson to reach out and help each other free themselves from alcohol addiction and abuse while still working and living in their own homes and communities.)
Woodson was given favored status at Eastern -- and access to a typewriter. With it, he wrote a very readable account of his stay, which was published by the Macmillan Publishing Company.
I happened across his book by accident, one of five or six I grabbed for a dollar on the last day of a university library bag sale. Carefully pasted into the back cover was a letter to a previous owner from the publisher. The letter, dated 1944, revealed the identity of the author and some of the details of his life.
Woodson's story shows a man who slowly grows more and more aware of the true price he will pay for the desperate act of allowing himself to be declared insane. By the end of the book, he concludes he'll be unable to return to the city and the work he loves. His solution, according to the letter from the publisher, was to start a new career as a social worker at Eastern. I can only guess that this allowed him to engage in work that had meaning, and let him relate to a social group in which he'd be viewed as a "success," rather than meet the ostracism he feared awaited him in Tulsa.
The chapter reprinted here, "The Sterilization Spectre," is an exceptional account of a barely remembered piece of our history. During Woodson's stay at Eastern, Oklahoma passed a law authorizing sterilization of inmates about to be paroled, at the discretion of the institution's superintendent. Everyone in the state hospital knew about the new law, but this is the only account I've come across from the point of view of persons against whom the law was directed.
As it turns out, Oklahoma was conservative in applying its law. As of 1938, it had sterilized 49 men and 236 women. California had sterilized over 12,000 people.
Paroled from the hospital in 1932, Woodson didn't get to enjoy his new life very long. In 1933, he died fof bone cancer.
-- Stephen Drake.
I managed to get one chapter of the book put up on the web, having to do with sterilization.
There's another chapter, though, that is also of some historical importance. Chapter 10 is titled "The Sleeping Sickness," and describes the earliest flood of victims of encephalitis lethargica into the institution.
The chapter describes an experimental treatment given to these "limber necks," and the results (experimentation without permission was commonplace in those days.).
quote:When they began taking the treatment several of the patients had their heads drawn backward so far that they were forced to look straight upward all the time. The upper lips of most of them were drawn upward in a continual snarl; hands, arms and legs were twisted or feet turned to one side. One or two had their heads drawn down on one shoulder. Most of them could not feed, dress or otherwise care for themselves.
Now all who have been taking the treatment can feed, dress and care for themselves, their heads have straightened up or come forward, limbs and feet have improved, and nearly all of them are helpful around the ward. To my untrained eye several of them appear to be about ready to go out and resume a place in the world. But this would be extremely bad judgment. It is far better to have them remain here for a time in order that the physicians may study the effects of after the medicinal treatment has stopped. It may be that the good effects are temporary. *** Atrophine sulphate, very poisonous in ordinary amounts, is the basis of the treatment. A few drops of a weak solution of it are administered at the start. Each day the dose is increased by a drop. This is continued until the maximum dosage which it is believed the patient can stand is reached. The treatment is then discontinued and the patient carefully observed. If conditions warrant it the course is repeated. (pp. 162-163)
This chapter was written sometime in 1930 or 1931. In spite of physically going through numerous medical journals - scanning for articles on the subject during the 1930s - I haven't found a mention of this treatment.
Which leads me to believe it might have worked out the same way the treatment with L-Dopa worked out over 30 years later. There are some things we just might never know.
But the letter from Sacks was very gracious - he'd "heard" about treatment with atropine, but had never come across an actual account like this.
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PSI Teleport: I've just added you on my human list. If you want, you can give me your e-mail and I will gladly discuss with you the conditions under which you will become the head of my list
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quote:I've never been good at interacting with people who aren't remotely near my level of...intellect, maturity, whatever. I don't even babysit because I don't relate well with "normal" children. I've always admired people who are not intimidated by disability, though, and you are no exception.
I grew up plenty intimidated by disability - remembering of course, that I wasn't thought of as having a disability myself.
But my parents, totally inadvertently, planted the idea that mental retardation was the worst thing in the world that could happen to anyone. It was an easy trap for them to fall into.
I dealt with a lot of pain - headaches, mostly, up until the age of ten. My parents, in an effort to make me feel better about it, would emphasize how lucky I was to be alive at all. But they didn't leave it at that.
They said, using the words of the doctor who delivered me into the world, that I was expected to be a "vegetable." "Vegetable" became the word that symbolized mental retardation and my narrow escape from this awful fate.
My parents know better now. They were kids when they had me (or what I think of as kids now). It was not one of their better calls, but an understandable one.
What changed? A couple of opportunities and making the choice to be open to change.
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Pooka, remember some of us don't have our health or all of our functioning and we can still wake up feeling pretty good.
Bob the Lawyer,
I have a lot of stuff that overlaps with Parkinson's, but I don't think of of myself as "suffering" with any of that. (I definitely DO suffer from migraines when I have them.)
I have a tremor that kinda increases and decreases at points during the day. I have very bad balance - I rely on my vision much more than most people do to keep myself positioned in space. I have incredible difficulty learning any kind of complex motor skill - it took me over a year of typing for at least a half hour a day to be able to type over 20 WPM - and with a very high error rate. I cannot do two motor activities at a time easily - even as a kid, my parents found it amusing that if they talked to me while I was making a sandwich, I'd stop making it while talking. (And when I drive, I do it with few distractions. Diane is free to talk, but she knows I probably won't be listening or responding to what she says.) A lot of this seems to be slowly getting worse - which I more or less expected. Not that there's anything out there that can help me understand what to expect as I age - there aren't too many people out there even close to my age with similar neurological histories.
As to bioethics, "floating the boat," doesn't quite describe my relationship with the field. They all seem quite willing to toss me and a number of my friends off the boat. We try to rock their boat when we can.
PSI T and Corwin: Let's just let humans be humans, shall we. And just what the heck IS a humans list, anyway?
Thanks to everyone else who has read this, whether they've posted or not. I've enjoyed sharing this. As much as this particular story wanted to get told, it's the first time it's happened.