“The single biggest problem in communication is the illusion that it has taken place.” ~George Bernard Shaw
I’ve written about this before, the fact that Pearlsky cannot communicate AT ALL. I find that people often have trouble with this, as a concept. It is actually very simple. And, very complex.
We have been evaluated by two very well established organizations for augmentative communication as posted about previously.
Everyone “gets it” when I say she is non-verbal. That one is easy, she does not “verbalize” …
Main Entry: ver·bal·ize
Inflected Form(s): ver·bal·ized; ver·bal·iz·ing
1 : to speak or write verbosely
2 : to express something in words
So why don’t people understand when I say she cannot “communicate”?
Main Entry: com·mu·ni·cate
1 archaic : share
2 a : to convey knowledge of or information about : make known b : to reveal by clear signs
There are three primary aspects to “communication,” the sender, the message and the receiver. The “roles” of the sender and receiver may continually switch, as in a conversation, or stay in one form as in a lecture. The message itself must travel via a “medium.” You can look at that medium as sound (e.g.: voice), writing, head shaking, smoke signals, Morse code, any of many movements, etc.
A message is composed of elements (typically words, strung together in sentences, individually made up of letters or sounds). The simplest message is either the existence of a message or not. This requires just one basic element and the presence or absence of said element (e.g.: sound or silent, smoke or no smoke). The next step is one of two “messages,” yes or no, on or off. This is “binary” and what every computer system is based on. After this we can get more complex, such as Morse code which requires five basic elements (dash, dot, inter-character gap, short gap, medium gap). So to communicate in Morse code, one needs to be able to produce 5 distinctly different “elements.” To communicate in binary, one must be able to produce 2 distinctly different elements. To communicate in written English, one must be able to write 26 distinctly different elements, to speak English it is generally thought that one must be able to enunciate 44 sounds (or phonemes).
Behind (so to speak) the message is the intent, the thought. For a message to be communication, it must be presented or formulated from one wanting to communicate, wanting to pass on a message. This can be a computer program, a university professor, a puppy, a severely disabled individual, or an angry girlfriend. The desire to communicate, the intent, is vital and as important as the message itself.
So, does Pearlsky communicate, can she communicate, will she ever be able to communicate?
We must start with intent. Does she have the intellectual capacity to attempt meaningful communication? You can argue that a newborn communicates, she cries when hungry for instance. That is communication, but probably without conscious intent. There are times when Pearlsky will make sounds in an apparent attempt to get my attention, and when I do respond, her demeanor changes and the sounds stop. Communication? I can tell from the sound of her whining (no other word comes to mind) if she is hungry or, well, just whining. Is there intent? Probably. Does she have an understanding of the world around her? It appears so. All of her teachers, doctors, and others around her believe she has the mind of a child, very possibly a seven or eight year old, if not on age. She laughs when something gross comes on during CSI: Miami. She laughs when I ask her if she is teasing me (when she appears to be). I am told her entire demeanor changes when she hears the front door open and I have not been home. The sounds she makes change when you attempt to engage her. She will often “take turns” making sounds in a conversational pattern.
After intent comes the formation of those elements needed for building a message. It is obvious that she cannot make 44 phonemes nor write 26 characters. But can she communicate in binary, two simple elements whatever they may be (i.e.: look left for yes, right for no)? Can she use a single element communication scheme (i.e.: hit the switch if you want to eat, do nothing if you don’t). Can she choose between two objects (a cup and a cupcake) in any manner (look, reach, kick, …). Yes, she can look around. She can reach. She can kick. She can make a sound, and not make a sound. BUT, can she do it under any control? Does she WANT to do it, and if so, can she?
She has never shown the ability to repeatedly, and with intent, communicate. She can apparently repeatedly bring her fingers to her mouth for stimulation. She has shown an ability to reach out for an object, occasionally. She will often lift her head when I put need to pull her shirt on. When asked to choose between two objects, sometimes one known she likes and one she does not, there is no apparent rhyme nor reason to the apparently random response. When we do something she likes (massaging her scalp for instance) and stop and ask if she wants more, the responses appear random (“make a sound if you want more,” “hit the switch for more,” …).
Then there are the times where, out of the blue, I say, “Pearlsky, can you look at me?” and about 50% of the time she will turn right towards me (yes, about 50%). But not when it is “If you are thirsty, look at me.” Then it is more random. That does not bode well for the understanding part, but muddies the water.
There is absolutely no repeatable intentional action that has been found. Yet, even the communication experts, after an hour or two with her, agree that there is a lot “in there.” That she does understand.
Yes, it makes no sense. But, without that repeatable ANYTHING, repeatable intentional movement, look, twitch, anything, then communication is not an option. We cannot get a repeatable do “something” or nothing, let alone a repeatable look here or there, reach or don’t reach, make a sound or stay silent. Nor does it happen with repeated efforts, over a school year, trying the same basic idea or action.
Is there “communication”? Absolutely not. Can I listen over the phone to the noise she is making and tell the teacher or nanny exactly what is wrong? You bet’cha I can. “Communication”? Hell yes.
As for the mandated No Child Left Behind (NCLB) crap, here is a direct quote from my state commissioner of education:
Alternate assessments measure the educational performance of the small number of students who are unable to take standard [NCLB] tests due to the complexity and severity of their disabilities. These students participate in [NCLB] through the alternate assessment portfolio, which in accordance with the law, must be compiled and submitted in the same content areas and grades as those in which standard [NCLB] tests are administered.
Look at those words: “.. in the same content areas and grades …” mandates that Pearlsky be tested in math and social science. I have argued this with the state department of education, and yes, that is what it says. Furthermore, the alternate (for “special needs” students) “consists of a portfolio of “evidence” collected during the school year to document a student’s performance of the skills, knowledge, and concepts outlined in the state’s Curriculum Frameworks.” [emphasis theirs] Document her skills and knowledge, document the knowledge of a young woman who cannot communicate AT ALL. Test her over a period of at least 45 days, asking her mandated questions. About math. About science.
Yeah, Pearlsky can do that. Go ahead, ask her a math question.
Is it cruel to ask her questions? If she understands you are asking a question and if, in fact, she is incapable of answering it, and especially if she knows she cannot answer it, then yes, it is cruel.
Now go read this and tell me how to sleep at night.
Pearlsky and my Sophie are much alike. It’s been my life’s mission to maintain my belief that, as the Chinese doctor once said, “she in there, she know.” And it might be what makes it hard to sleep at night or even to get through each day, but it’s also what makes me get through each day.
Beautiful, informative, interesting post. I commend you. Keep going.
You can listen to the noises that Pearlsky makes over the phone and you can tell exactly what is wrong? Wow. You never cease to impress me. I hope I will get that good at interpreting Izzy’s sounds one day.
Thank you for the link to Christy Brown’s story. It might keep you up at night, but I think it also gives hope in a way. Not to mention that it is a great reminder that there is no reliable way of gauging a person’s intelligence if s/he is non-verbal with impaired motor skills. So it might not be a good idea to shrink them or involuntarily euthanize them. But that’s another topic.
Have you heard of Facilitated Communication (FC)? It has something of a chequered past in the USA. But. It might just be useful for Pearlsky, or indeed Sophie. Google Anne McDonald and Rosemary Crossley.
I am an AAC user (alternative and augmentative communication) and I have 2 friends who communicate with FC. One also has an independent yes/no response, one doesn’t. When I was younger and not nearly as disabled as I am now (progressive condition), I was taught by the latter friend and her mum to facilitate for her. Sitting to her right, I reach over and find her left hand with mine, hold it to keep her involuntary movement damped down. I hold her right hand in mine, unfold her index finger, and away we go. Holding her hands cuts out enough of the involuntary movement for me to feel her working towards moving her hand (and mine) one way or the other.
I only learnt to do binary pointing but with more experienced facilitation, my friend uses a letter chart. I haven’t seen her for a while but we keep in sporadic contact via Facebook. FC is terribly open to misuse but when it works – even if it’s only making that binary response possible – it’s fantastic.
what an excellent post! It’s like you have a PhD or something….
I know I might cause a firestorm here, but I think Facilitated Communication is alot like using a Ouija board. The intent of the one “helping” the person with challenges is EASILY transferred to said challenged person. I can also tell you from personal experience that my daughter can spell a heck of alot better when certain people are “helping” her hold her pencil as opposed to some other person. You will discover that FC is very popular with certain folks in certain disability communities and man oh man most of those grade school kids suddenly write alot like you and are full of very political opinions. THIS IS OF COURSE ONLY MY OPINION AND ANYONE IS FREE TO DISAGREE…AS I AM FREE TO HOLD THIS OPINION. Ask Stephanie Lynn Keil about FC…
Ummmm, that comment came across as way harsher than I intended..sorry…I am particularly passionate about that subject.
Wow. Um. Okay, first, no PhD for me. Alas. I’m still working on finishing my first degree but it keeps going wrong because of time in hospital, and problems with sorting out my personal assistants (aides in the US, I think?). I’d be flattered but it sounds more like you’re suggesting that I’m somebody else, which is confusing me.
I am not an FC user. I didn’t really think much of it until I learned to do it for my friend. I was pretty cynical until I learned how to do it and felt her movements for myself. That friend has CP, I know that FC combined with varying degrees of ignorance, wishful thinking, attention seeking and God knows what else has resulted in some ludicrous situations and some terrible harm has been done with its misuse – I met a family who as far as I could tell were using their kid as a ventriloquist’s doll, everything she ‘said’ only ever came out from behind closed doors, nobody outside the family was ever allowed to even talk to her really.
So I get it, I really do. But the fact that unethical and/or gullible people have misused something doesn’t usually completely invalidate it as a concept.
And yes, I’m political. Have been since I was a kid. I lived in a nursing home for 9 months, I’ve bounced in and out of hospitals and have basically fought for half a decade to be allowed to live my own life and have access to the most basic tools – mobility, transport, care, communication.
No worries on the passionate front. I’m the same. No harm done.
Becca….the PhD remark was meant for Single Dad! But thank you very much for being forgiving toward my comment. I have known FC to be used exactly as you have stated above, and also to push certain agendas in certain disability groups and advocates. I am glad you were able to notice the movements in the person you worked with…it’s that sort of attention to detail and the ability to remain very, very neutral that is key with any sort of assistance in dealing with communication. As a teacher, I find that there are more unanswered questions with FC than not…so I am suspicious. We have to try everything, though, don’t we? You are very kind.
Maybe I need to stick to topics we can all agree on, such as school nurses! I took several things out of this post, last minute editing, including FC and operant behavior. I will post Communication Part 2 in the next day or two and I am sure that will elicit some good dialogue! Thank you everyone for the good words …
People sometimes see my son looking handsome and healthy and assume he functions higher than he does. The other day at a CVS, a man in line was holding up his hand to my son and said “High five!” He must of said this a few times before I finally said, “He really functions a little low for that, but I am sure he appreciates you trying.” The man asked me, “What can he do?” I said, “He laughs a lot.” And the man said, “That’s too bad because I’m not very good with jokes.” G.B. Shaw sums it up best in his quote Single Dad gives us.
Cheers to all for a very convivial dialogue. Getting to that point of agreement seems to be worth the several clarifications and prompting some discourse. So you seem to have some reinforcement for topics that are not known to be agreed upon by everyone, SD. I’m pleased to see that a doctorate is still seen as a positive/compliment. On FC, I am a skeptic, but I am deeply respectful of parents who “have to try everything” and can interpret the pain of their children from non-verbal cues.