I love you

October 31, 2008 7:59 PM

"Elke Wisbey, 6, was born with brain damage and cannot walk or speak. After her community raised funds to purchase a state of the art communication device for Elke, the little girl was able to use tiny eye movements to speak her first words through the machine: 'I love you.'"
posted by An Infinity Of Monkeys (17 comments total)

I wonder if "I hate you" was one of the available phrases.
posted by Mr. President Dr. Steve Elvis America at 8:02 PM on October 31, 2008 [4 favorites]

Her second message was "Whoa, this is just like that Metallica video."
posted by ColdChef at 8:27 PM on October 31, 2008

Although she is more physically able than Elke, this story reminds me of the change a communication device made for the life of this girl. I'd actually been following the story told in the book "Schuyler's Monster" from the days when it was just a blog -- Schuyler also cannot speak due to a congenital brain defect, but at the time she was diagnosed doctors also predicted mental retardation, seizures, and a host of other problems. Her parents suspected a little differently.

When they got her a communication device, Schuyler really started opening up -- and two years later, Schuyler, who's eight, just got a report card that looks like ones I would get when I was eight. She's exceeded the child device and moved on to an adult-level one. She uses it to tell dorky jokes to her father.

She's also a seriously kick-ass kid, too.

But -- my point is that unlocking communication unlocks a host of other things. Elke's parents should just get ready for some incredible things.
posted by EmpressCallipygos at 9:06 PM on October 31, 2008 [5 favorites]

Very touching, thanks.
posted by wuwei at 9:14 PM on October 31, 2008 [1 favorite]

I was all set to snark here, and here's why. I'm pretty sure that a lot of these devices are oversold to severely disabled kids who can't make use of them, and then carers use them to impose their own interpretations on stuff -- either by 'assisting/guiding' the kid in their use of the device, or by picking out messages in random babble, or whatever. That's why their first message is always something like 'I love you mom and dad', and not something more probable like 'These bedsores are fucking killing me' or 'Can someone scratch my taint? It's been itching like hell for the last six years now...' or 'God, why hast you foresaken me, you bastard!!!'

Yet despite my snarkishness, that Schulyer's Monster's blog was absolutely fantastic. I don't think I've ever seen more than a couple of blogs that were worth reading, but that one definitely is.
posted by PeterMcDermott at 3:53 AM on November 1, 2008

Back in the early days of the Internet (when it was text based, remember that?), I connected with a fellow Apple IIe user via an education related discussion board. I chatted with him frequently, usually about the IIe.

At some point he posted that he had a hard drive for sale (woo hoo!), I wasn't sure what I would do with that massive 10 meg drive, but I knew I had to have it!

I was living in Ann Arbor at the time, and he was in Grand Rapids, I made the drive one Saturday morning to a fairly nice house in the outskirts of GR.

An older gentleman met me at the door, I introduced myself, and he said, "oh, you're here to see my son", and invited me in and led me to his dining room.

There, sitting in a wheelchair, braced into position by a crapload of supports, braces, and leather pads, with a small plastic tube in his mouth, was a young man about 25 years old, obviously paralized.

I just stood there for a moment and then noticed that there were letters appearing on the screen of his IIe. There was no physical keyboard, just a virtual keyboard on the bottom of the monitor, over which a small cursor moved relentlessly.

I eventually noticed that the only part of his body that was moving was one toe, which moved a trackball located on the floor. When he had positioned the cursor over the letter he wanted, a puff of air served as a mouse click (although, IIe's didn't have a mouse!).

I sat with him for an hour or so, we talked about computers, he told me about the college program in computer technology he was in through MSU, the equipment was developed at State and was the first of its kind. His father explained that, until the technology was in place, his son was pretty much unable to communicate.

I never saw anything move other than his eyes, and his toe. It was a moving experience, I pretty much stopped feeling sorry about the small barriers in my own life...
posted by HuronBob at 5:06 AM on November 1, 2008 [21 favorites]

ouch, apologies for the use of "move" and "moving" in that last sentence... unintentional and only noticed after the post button had been bopped.
posted by HuronBob at 5:09 AM on November 1, 2008

That was the beauty of the Apple II- hundreds of adaptive devices were made for it. Well did you get the hard drive? I hate it when people don't finish the story...
posted by Gungho at 6:20 AM on November 1, 2008

And if you did get it, did you in fact manage to fill it?
posted by jaduncan at 6:52 AM on November 1, 2008

Actually, allowing young people who have to use communication devices to express themselves like their verbal peers is a serious debate in those circles. I wish I could find links, but my google-foo is failing me. But it ranges from basic things like picture card sets that don't include genitalia (stop being a prude - how's the kid supposed to tell you if there is a problem down there?) to sets that don't feature adequate ways to express negative events and emotions to whether they should be enabling teenagers to talk like teenagers and use swear words and slang.
posted by Helga-woo at 8:17 AM on November 1, 2008 [5 favorites]

I'm curious about the linguistics here. There's a clear path kids follow when learning language, and full fledged sentences like "I love you" (with all the abstraction inherent) take quite awhile. OTOH she's been hearing language for six years, so maybe language develops more quickly? Then again I imagine the language device she's using doesn't force her to start with basic phonemes, for all we know there's a big ol button marked "I love you" there.

Are there scholarly languages of kids with normal cognitive capability who learn language but lack the means to speak themselves, until suddenly they can? What happens?
posted by Nelson at 8:40 AM on November 1, 2008

Actually, allowing young people who have to use communication devices to express themselves like their verbal peers is a serious debate in those circles.

So the devices aren't good enough to let the kids speak for themselves in this debate? Presumably, thats why they always end up saying shit like 'I love my mommy and daddy'?

There's an HBO documentary -- Autism, the musical -- and the woman who directs this musical has a severely autistic kid. For the last fourteen years or so, this woman's life has revolved around this kid. So, they get in the speech therapist and the expensive pointy machine, and she holds his hand and the machine while key and finger come together. And what's the first thing this kid says?

'Mom, be more of a listener.'

Now it may well be that the kid has waited 14 years to say that, but I couldn't help but wonder if it wasn't the speech therapist pushing for more business. 'Your kid is desperate to communicate with you, and with the right investment in my time and my hardware, he'll let you know what he really wants. You might have the next Steven Hawkins in there.' That's got to be a very appealing message to desperate carers.

I'd love to know if that kid is now communicating without his therapist present, and if so, what he's actually saying.
posted by PeterMcDermott at 9:06 AM on November 1, 2008

So the devices aren't good enough to let the kids speak for themselves in this debate?

Maybe the kids want to say "f*** you."
posted by Kutsuwamushi at 9:12 AM on November 1, 2008

So who determines the range of vocabulary in devices like this? Are there best practices, or other writing about the topic? I could imagine a bunch of engineers making arbitrary choices, without taking into account prior work in the field.
posted by anirvan at 11:31 AM on November 1, 2008

Eponysterical?
posted by Esoquo at 11:45 AM on November 1, 2008

helga-woo: but my google-foo is failing me.

that should be google-fu. too many oo's for my wee brain to process. carry on.
posted by CitizenD at 2:52 PM on November 1, 2008

There are a lot of interesting questions in this thread, not as many answers. I would love to hear more about the topic from someone who is disabled and uses a communications device. I'm afraid that even as I begin to think about it, I start making a lot of assumptions.
posted by Miko at 5:31 PM on November 1, 2008