My Favorite Robin Williams Movie – Awakenings – The One That Always Makes Me Cry

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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. [Smile]

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.

Haleigh Poutre’s New Life and the Flawed Lessons People are Taking Away From Her Story

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Readers of this blog will hopefully remember the story of Haleigh Poutre, a child in Massachusetts who was abused and then neglected, failed and abandoned by just about every professional whose job it was to act to safeguard her welfare and safety.  She became the subject of a life and death* court battle that sanctioned her death but rallied just one day after the ruling was made. (*- The press and bioethicists used and continue to use “end of life” to characterize the court battle, evidently drawing inspiration from Lewis Carrol in terms of using ludicrously flexible terminology.) Here’s a summary I wrote back in 2008:

Haleigh Poutre narrowly escaped the death planned for her by medical professionals at Baystate Medical Center and publicly-appointed guardians from Massachussets DSS. These professionals all signed off and went to court to seek removal of both ventilator and feeding tube from Haleigh Poutre just 8 days after her admission to the hospital. Poutre was in a coma, the result of injuries allegedly inflicted on her by her adoptive mother and stepfather, Jason Strickland. (NDY issued a press release calling for a larger investigation than actually happened)

Poutre’s adoptive mother committed suicide. Strickland, quite probably to avoid being charged with murder, fought the DHS in court, seeking to have Poutre’s life-support maintained.

In a case of incredible irony, the case took enough time to allow Haleigh to improve. In fact, news reports that she was awake and responsive emerged just one day after a judge approved the removal of Haleigh Poutre’s feeding tube.

If you’re looking for a hero in this story, you can stop now. There aren’t any.

I’m happy to say that there are now “heroes” in Haleigh’s life.  By “heroes” I mean people who love her, care for her, and look out for her interests. That’s not really a “hero,” but her earlier life had no one who fit that description.  The news was shared with the public on August 3rd when the Boston Globe published an update on Haleigh Poutre and her life now.

The minister winds up his welcome to some 400 people, and soon lyrics flash karaoke-like on a large screen. A spirited Christian pop song, “Blessed be Your Name,” fills the Westfield Evangelical Free Church.

In the back row, a young woman, sitting in a wheelchair next to her adoptive parents, lights up.

Though she can’t read all the words, she sways to the music and claps her hands, the nails painted pink with white polka dots. She loves cheerful tunes and a crowd, and on this Sunday, she has both.

Keith and Becky Arnett could have predicted that Haleigh, 20, would brighten at this part of the service.

She entered their lives as a 14-year-old foster child, then known as Haleigh Poutre, who had been at the center of a passionate end-of-life court battle. Her singular story of abuse, compounded by government lapses, drew national media attention. It remains one of the darkest chapters in the state’s child-protection system. (Emphasis added.)

The term “end of life” is emphasized here for a reason. It’s also used in the subtitle of the article. Haleigh has the dubious distinction of being the only person I know of who has had a battle over whether or not she’d be allowed to live described as “end of life” before, during and after the court battle to determine whether or not she would live or die. It was presumptuous and inappropriate to characterize her publicized court case as “end of life” before the verdict, and it’s absolutely ludicrous to describe anything about her as “end of life” now – unless, of course, you want to gloss over the messy realities and avoid truly difficult discussions.

Haleigh, btw, should no longer be referred as “Haleigh Poutre;” After years of being foster parents, Keith and Becky Arnett adopted Haleigh, whose name is now Haleigh Arnett.

Lessons Mislearned?

Wesley Smith and Thaddeus Pope, both familiar to readers of this blog, have written in response to the Globe’s update on Haleigh.  I don’t agree with some of the analyses they offer. In Wesley’s case, it’s more a matter of emphasis or perspective. My differences with Pope are more substantive.

  • Like the Globe, Pope refers to cases like Poutre’s as “end of life” which clouds the actual nature of such cases, which are ones that are – to put it bluntly – cases to decide whether or not to end a life.  When Pope and other bioethicists promote an array of disparate situations to which to apply a term like this, it’s hard not to suspect that bioethicists, assisted suicide advocates, etc. actually want the public to be confused about a number of life and death topics in order to avoid informed discourse. The press, of course, just parrot the professional jargon they’re fed.
  • Thaddeus Pope claims that “her (Haleigh’s) story powerfully illustrates the limits of prognostication for some critically ill patients.” That’s not accurate at all.  Her story illustrates what can happen when doctors ignore long-established guidelines regarding wait periods for comas in making a determination of persistent vegetative state. Eight days doesn’t come close.
  • The Globe, Wesley and Pope all praise legal “reforms” enacted in the wake of Haleigh’s near-death experience. I’m not familiar with the final form of the second reform passed, regarding outside opinion on life and death decisions. The first version (and for all I know the final version) only called for a second outside opinion for wards of the state. I never understood why it was limited to wards of the state. Did they think individuals with biological or adopted families don’t get bad medical advice of the life or death type?

I do know more about the first “reform” passed in Massachusetts, ironically named “Haleigh’s Amendment,” sponsored by then-state Senator Scott Brown (yes, that Scott Brown).

Here’s what I wrote back in 2008:

Back in March, for example, almost no coverage was given to the inaptly named “Haleigh’s Amendment” that was introduced – and passed into law:

‘Haleigh’s Amendment’

 During debate last week on legislation pertaining to the abuse and neglect of children, which is intended to strengthen the Commonwealth’s oversight of children under the charge of the State, an amendment written by Sen. Scott Brown, R-Wrentham, was passed unanimously. The amendment protects victims from those who have been charged with their abuse or neglect.

Brown filed “Haleigh’s Amendment” in response to the tragedy of the Haleigh Poutre case in Westfield in 2005. Haleigh had been hospitalized as the result of alleged abuse at the hands of her adoptive mother and stepfather who had burned and beaten her into a coma with a baseball bat. While on life support, Haleigh’s stepfather attempted to obtain guardianship of her even though he was suspected of the abuse.

This amendment would prohibit an individual from being appointed a guardian or medical proxy if they have been charged with assault and battery, or neglect of the incapacitated child. In this case, the amendment would have removed any ambiguity as soon as the stepfather was charged.

Currently, the court may appoint a guardian for a person who is unable to make or communicate informed decisions due to physical incapacity or illness.

Please re-read the above with the circumstances of Haleigh Poutre’s near-brush with death in mind.

If this law had existed when she was admitted to the hospital, she’d be dead now.

That’s right. She’d be dead. Jason Strickland, motives aside, would have had no standing to challenge the DSS-appointed guardians in court. Haleigh Poutre’s death would have proceeded smoothly, efficiently and – most important of all – quietly.

It’s easy to see how this prevents the State from being embarrassed in a similar way in the future. It’s less easy to see – using Haleigh Poutre’s story as the rationale – how this is seen as furthering the “best interests” of children.

And, while the abuse of Haleigh was especially horrific, this bill strips all rights in medical decisionmaking from parents who haven’t actually been convicted of anything – and the bill strips those rights even from those charged with any level of neglect.

Please read the entire article at the Globe. As usual, I’ve devoted so much time to the bad stuff, that I have no room for the good stuff. And there’s plenty of that in the article. Beyond her family, she lives and engages in a larger and accepting world, collected some unexpected supporters along the way, and made some amazing progress. For some happy reading, go check out “A new life for Haleigh.”

It’s (Long Past) Time for the U.S. To Ratify the United Nations Disability Treaty

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I want to pass on a message I received about activities tomorrow in support of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).  The rally is being sponsored by the National Council on Independent Living, one of NDY’s closest allies.  Here’s the information I received (excerpts):

PLEASE Call your Senators!  And join us at a Rally for the CRPD to let the Senate know we want this brought up for a floor vote NOW! 

When:
 July 29th, 12:15 pm

Where:
 3rd Street NW between Pennsylvania Ave NW and Maryland Ave SW

If you’re not located in DC, you can take part by visiting your Senators’ in-state offices and expressing your support for the CRPD!  You can also watch the rally via live video streaming online at https://bambuser.com/channel/USICD

New to the Disability Treaty? There’s a quick overview at http://disabilitytreaty.org/faq

And so this is a perfect time to remind people why NDY supports the CRPD.  From our blog a couple years ago:

The attention that the CRPD is receiving this week and next is a reminder of how important it is for the disability community to unite behind this groundbreaking treaty that has been years in the making.  I say “groundbreaking” not because it necessarily adds to U.S.law, as most say it does not, but because it demonstrates the worldwide significance of the disability community and disability rights.

That being said, let me point to some specific Articles of the CRPD that are relevant to Not Dead Yet’s goals.

First, there is Article 10, entitled “Right to life,” which does not carry exactly the same connotation and meaning that the phrase does in U.S.culture-war politics.  Article 10 simply states:

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

Not Dead Yet’s concerns about futility policies, surrogate decision-making and assisted suicide all pertain to the notion that persons with disabilities have the same inherent right to live as everyone else.

CRPD Article 16 addresses “Freedom from exploitation, violence and abuse.”  Article 16 begins by stating,

1. States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects. . . .

The Article goes on to call for related efforts toward abuse prevention, public education, reporting, victim support services, protection services, investigation of abuse and appropriate prosecution of abusers.

As we also know, persons with disabilities are more likely to experience abuse than their non-disabled peers.  This reality has a direct bearing on Not Dead Yet’s goals of ensuring that the civil rights of disabled people are protected from inappropriate surrogate decisions to withhold life-sustaining treatment, and of ensuring the equal protection of the law when disabled people are the victims of violence and even homicide.

Finally, CRPD Article 25 addresses “Health.”  The most relevant portions affirm essential principles of nondiscrimination in health care:

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to . . .

d) Require health professionals to provide care of the same quality to persons with disabilities as to others, . . . through training and the promulgation of ethical standards for public and private health care;

e) Prohibit discrimination against persons with disabilities in the provision of health insurance, . . . ;

f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Obviously, subsection “f” directly states Not Dead Yet’s goal to prevent the withholding of health care, and even food and fluids, on the basis of disability.  Sadly, we know that this happens in the U.S.and elsewhere.  Not Dead Yet has been talking about it for years, and this year our concerns were substantiated in a major Report from the National Disability Rights Network.  The CRPD won’t cure this injustice, but it will affirm that it is an injustice, and help establish that it is an international human rights issue.

The U.S. should ratify the CRPD, which has already been ratified by 117 other nations as of July 2012.  It won’t change U.S.law, given that disability rights consistent with the CRPD are already on the books here.  But it will provide global leadership on disability rights and help protect our disabled citizens abroad.  Moreover, it will affirm our nation’s commitment to our stated ideals of equality and justice for all.

Press Release: Not Dead Yet Advocates Against Oregon-Style Assisted Suicide Bill in the UK

Our News & Commentary Blog

[Editor’s Note: For a copy of this release in pdf format, including an attached copy of John Kelly’s letter to the House of Lords in Word format, please go to the PRWeb version here.]

Not Dead Yet USA today announced an advocacy and outreach effort to the British House of Lords, which is to debate an assisted suicide bill, HL 6, in Parliament on Friday, July 18. In addition to blogging and Twitter support, the group released an open letter to the House of Lords by Northeastern regional director, John Kelly.

“Over the past year, we have beaten back Oregon-style assisted suicide bills throughout the Northeast,” said John Kelly, “I wanted to share that experience with the House of Lords.”

“Bill 6, like the American bills, draws on shoddy science to create reckless public health policy,” wrote Kelly in the letter. The letter summarized the disability rights arguments against assisted suicide, with a list of problems including the impossibility of accurate diagnosis, the threat to depressed people, inevitable cost calculations, dangers for elderly people, and prejudice against disability.

Kelly wrote, “What we disabled people see in legalizing assisted suicide is that some people get suicide prevention, while others get suicide assistance, based on value judgments and prejudice.”

“We are joining our sister group Not Dead Yet UK and other advocates against this bill, which leaves vulnerable people unprotected,” said Not Dead Yet USA president Diane Coleman. Not Dead Yet UK plans to hold a rally on Friday at the House of Lords to voice opposition to the bill.

Not Dead Yet USA’s research analyst Stephen Drake blogged about UK proponents’ strategy of avoiding comparisons with the European countries with legalized euthanasia, such as Belgium, which has allowed euthanasia based on disability and has made children eligible as well.

“Instead,“ Drake wrote, “UK assisted suicide advocates have taken to pointing to the United States as a shining example of how assisted suicide can be contained and safeguarded.”

“People tend to forget that slippery slopes don’t just happen,” Drake said. “Incrementalist strategies – taking planned steps toward a desired result – are commonly called ‘slippery slopes,’ but they are really political advocacy working for partial victories toward a final policy goal.”

Bill HL 6 will either be defeated during the debate or, more likely, referred to a committee for more investigation.

Join Thunderclap to Support Not Dead Yet UK Rally Protesting Assisted Suicide Bill

Our News & Commentary Blog

This important message comes to us from Liz Carr of Not Dead Yet UK:

If you tweet, please sign up to our ‘Thunderclap’ to go off on Friday 18th July just before the House of Lords begins it’s debate on the ‘Assisted Dying Bill’. Please pass on and share! https://www.thunderclap.it/projects/13705-assisted-living-not-dying

Support Not Dead Yet UK Demonstration against Lord Falconer’s Bill 18th July 2014

Lord Falconer has resubmitted his bill to change the law on assisted dying. It will be debated in the House of Lords on the 18th of July. Not Dead Yet UK and several other supportive disability organisations are lobbing peers to ensure this bill is defeated.

  • We are deeply concerned that a change in the law will lead to disabled people – and other vulnerable people, including older people – feeling under pressure to end their lives.
  • The issue tells us a lot about public attitudes towards disabled people.
  • Why is it that when people who are not disabled want to commit suicide, we try to talk them out of it, but when a disabled person wants to commit suicide, we focus on how we can make that possible?
  • We believe that the campaign to legalise assisted suicide reinforces deep-seated beliefs that the lives of sick and disabled people are not worth as much as other people’s. That if you are disabled or terminally ill, it’s not worth being alive.

Disabled people want help to live – not to die.

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