Sunday, 19 June 2011

Someone In There

I watched “Awakenings” this weekend, which is a movie about people with multiple and profound disabilities. It’s one of my favourites, though not one I watch very often.


“Awakenings” tells the story of Dr. Malcolm Sayer (based on Dr. Oliver Sacks) and the success of his idea to administer the drug L-Dopa to a group of people that had survived encephalitis. The people in question were hospitalized for essentially being “living statues” – unable to move or communicate, unresponsive to most stimuli, and assumed to lack capacity to respond to the world on even the most basic level. High dosages of L-Dopa caused an “awakening” in these “statues”, bringing them back (albeit briefly) to a place where they could interact fully with the world again.

"Feed and Water Them"

I know from reading reviews of “Awakenings” (the movie) that the science behind it is representative of what went on in Sacks’ actual experiments. That’s interesting, but it’s not what was has me thinking that I would like to read Sacks’ account of his work (also called “Awakenings”); I’m more interested to see if his motivation for starting work with  these patients was the same as the Sayers character’s in the movie. Sayers, played by Robin Williams, observed signs in the “statues” that convinced him that there were people inside them, despite their profound disabilities, that could be reached: they caught objects, they exhibited purposeful behaviour, they responded to music (but each one to a different type of music) and to touch from others. No one had ever noticed before, because no one had taken the time to try to see if there was a way to reach these people.

“We call this ‘The Garden’” an orderly explains to Sayer about the ward on which his patients reside. “Because all we do is feed and water them.” Everybody, even the doctor who had first identified encephalitis as the cause of the disabilities (Dr. Peter Ingram, in the movie), figured that there were no longer people in those bodies to reach. Sadly, I still see the "feed and water" perception about people with profound disabilities from time to time.

I’ve spent the better part of an hour now looking for a website that I found just after the last time I watched “Awakenings”, several years ago. I haven't been able to find it, but I remember being very moved by it.  The young woman who wrote it had lived with profound disabilities and been unable to communicate for over half her life, and then become able to; her thoughts about how frustrating it had been to live in a world where everyone assumed that she was just an empty body with no awareness of her surroundings were eye-opening and heart-breaking.

Connecting with People with Profound Disabilities

I absolutely believe that even if all evidence is to the contrary, we have to assume that people are “in there”, and that it’s incumbent on us to, as much as possible, to figure out how people communicate and how to communicate with them. I don’t know any people with the specific brain damage that the people in "Awakenings" lived with, but I know plenty of people with profound disabilities that are totally reliant on others for their care, that can’t coordinate their limbs to the point where they can propel themselves in a wheelchair or reposition if uncomfortable, and don’t communicate in any traditional way. I’ve had discussions with people (discussions that have broken my heart) who don’t believe that people living with profound disabilities should have been allowed to live at birth.

The thing is, people with profound disabilities *do* communicate; I’ve worked with several of them, and I’ve seen it. One used to purse her lips suddenly as I helped her to eat, which I took to mean, “No more.” Another cried when certain types of music were played around him. And Frances, who I called “my dancer”, loved to sit on the couch in her family’s living room and stretch her long, graceful arms over her outstretched legs. She’d move her arms forward, and open them up, and turn her torso to stretch further…bring her arms together again and peek at me from underneath one of them, smiling widely. Sometimes I’d hold her hands as she moved, so that we did a dance together.

She loved to move like this; she didn’t even need music. I loved watching her.

Assume Someone is "In There"

In “Awakenings”, the Peter Ingram character says that the virus that had turned Sayers’ patients into statues “did not spare their higher faculties”. When Sayers asked him how he knew this, Ingram says, “Because the alternative is unthinkable.”

It’s more “unthinkable” *not* to consider the alternative, and potentially leave a person who wants to engage with the world without the opportunity to do so…when it may be entirely possible for us to help facilitate that engagement. This is one time when it’s *always* okay to assume – assume that someone’s “in there”, and that there’s a way to reach them.

Rent “Awakenings”.  It’s a great movie:

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