I’m not usually emotionally affected by the passing of a well-known person. For a number of reasons, the death of Robin Williams has hit me emotionally like no other celebrity. Like many people, I’m a fan of his wild, off-the-wall humor that just seemed to pour out non-stop, but I’ll be darned if I can quote a single line of his comedy.
Last night, I read that Williams gave a Reddit interview recently and that his favorite role in a movie was playing Dr. Sayers in Awakenings. Last night, I found myself really longing to see the movie for the umptieth time, and Diane watched it – again – with me. I was teared up and/or crying through most of the movie, which is what I usually do when I watch it.
After much thought today, I decided to share this edited article I wrote about ten years ago, posted to an online forum I used to participate in – the forum had nothing to do with disability rights, euthanasia or anything else work-related – just a lot of smart and interesting people. Those familiar with my writing style will recognize my habit of drawing several threads together into a hopefully coherent whole. It’s also a little more personal than what I usually write here. I won’t feel offended if no one wants to read biographical info. 😉
Here – mostly – is what I wrote ten years ago:
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 – in part – 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 that allegedly helped 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 magaziness, 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 magazine 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.
Back to the movie…
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:
What we do know is that 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. With work, play, friendship, family. These are the things that matter. This is what we’ve forgotten. The simplest things.
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.