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Reflections on Language

by David Wetherow

 

Melanie writes: I am trying to put together an info package for Nic's aids and teachers in the fall. Do any of you know of a good but 'shorter' definition of Semantic-Pragmatic Disorder? I also need some for Hyperlexia and High Functioning Autism. I don't want to pile 40 pages on them so am looking for something in the short and sweet variety. Also does anyone have any other ideas on how to prepare for the fall. Nic will be entering Kindergarten and will (HOPEFULLY) have a full time aid. Trying to get everything as organized as I can now.

Dear Melanie, We've had a wonderful visit this week from a favorite aunt (age 80) who was meeting Amber for the first time. Over the course of the week, we've had many conversations about who Amber is, how we understand what she's thinking about, and how we think about moving towards connection, companionship, and contribution. Most of this conversation has taken the form of tiny stories, such as how Amber communicated to me that she's interested in helping children who are starving. We talked about how we're responding to this communication by finding the people in our community who are also passionate about the same topic and connecting Amber with those people (in addition to sending $31 to a foster parents' plan).

Aunt Renata is getting the picture. She's learning something important about Amber (about who she is, what she's thinking), about non-verbal communication, and about how we think about helping other people connect with her -- not as a 'child with a disability', but as someone who shares their interest. Renata is beginning to understand how important this is to Amber and also how important this can be to the other people in our community.

Very little of this conversation has been about 'spastic quadriplegia', 'expressive disorder', 'language processing', etc. Some has -- we made sure that Renata understands that when Amber turns away and struggles and grimaces, what is happening is a powerful reflex, and not a personal rejection. But what we really concentrated on what who Amber is inside, where we're going with all this (direction, vision, strategies), what she has to offer, and what works and what doesn't work. The basic discussion ends up being about Amber, not about CP. And almost all of it is in the form of telling 'micro'-stories.

So, whatever else you do about sharing information regarding Semantic-Pragmatic Disorder, Hyperlexia and High Functioning Autism, here is what I suggest: Find some way of introducing Nic to someone new -- someone who you like, and who likes you, and who might like Nic. Make it casual, easy. Pay attention to how you're making this introduction, with language, images, stories, ideas you use (you might even have a tape recorder running, with the new person's permission, of course).

Think about how you might instruct / inform this person if they were going to be assisting Nic (you might even ask them if you could practice this with them -- let them know that you're trying to figure out how to introduce Nic to school, the teacher, the kids, a new aide). What would be the most enhancing, engaging, life-giving, instructive, helpful, informative, encouraging things you could say? What language, stories, ideas, understandings would help this new person learn to feel safe, engaged, loved and loving with Nic?

Practice it. Tape record it. Write some of it down. Share it as an expression of hope, direction, and understanding. Think about your unique role as an announcer, interpreter, and bridge-builder to new relationships. Let your natural language form the basis for what you end up writing. It would be wonderful if you could end up sharing what you discover with the Our-Kids list.

Great question!

Peace,

Dave Wetherow

 

On one mailing list, we struggled for a while about the term 'retarded'.  One correspondent wrote: I prefer..."he's mentally retarded." That way I know how to relate to them.

That's exactly what I'm talking about.

We think that the word 'retarded' conveys a precise meaning that other descriptions or words fail to convey. We think that we understand this meaning because it's been in the vernacular for such a long time. But 'retarded' doesn't tell us anything about this person, or about this person's particular challenges, since it refers to conditions with an enormous range of causes and manifestations.

When I 'know that you're mentally retarded', the picture I make in my head about who you are is based on a powerful set of cultural stereotypes about mental retardation. In the newspaper article that I posted earlier this week, the father says, "I knew nothing about what mental retardation was," Bruce recalled. "I had these visions of horrible abnormalities, disfigurations and things."

The meaning that we make in our heads when we hear the word 'retarded' is based on generations of historical and cultural stereotyping. When we hear the word applied to an individual, we (both consciously and unconsciously) attribute those meanings to this specific person. Now we know less about the person than we did before, because we think we know more.

If I think that this 'knowing' tells me how to relate to you, my relating will (at least in part) be based on those stereotypes. I will express those stereotypes in the way that I speak to you, the way I interact with you, in the kinds of opportunities that I make available to you, and in the way I represent you to other people - at least until I get to know you better. But if the stereotypes cause me to distance myself from you, we lose that opportunity to get to know each other as unique persons.

When I know that you're 'mentally retarded', I know nothing about your gifts, capacities, and interests. I know nothing about your spirit, your identity, your dreams. The problem with 'politically incorrect' terminology is the potential it has to keep us from discovering these things.  When I hear the word, I actually know less about teaching, living with, learning with and learning from you than I knew before.

I think we owe it to our kids (and our friends) who have been labelled, to engage in the struggle to find and use language that is more enhancing, more truthful, more useful, more descriptive, and at a minimum, more precise.

I'll end with a quotation from an unknown source (if someone knows the source, I'd really appreciate a note about it):

ASKING BETTER QUESTIONS [this could be 'giving better answers']...

"(Marc) Gold was right, I believe. Don't spend time on assessing competence, spend time instead on developing competence. It is rather funny, as well as rather sad, to think of the time and energy which has been spent on the assessment of intelligence: days and years and whole careers of brilliant and caring people, the most highly trained people in special education and other fields, frittered away in reading and writing articles and whole shelves of books trying to answer the question, how intelligent is this person?

"Why didn't they spend their time, Gold proposed, in better answering the question, how can we makes this person more intelligent and competent? "The first question is a waste of time, a red herring. The second question is very worthwhile in setting our tasks of service."

We would add a third question: What language, what interpretation, what understanding will bring out the best in us? in our communities? in our friends and families and allies?

Peace,

Dave Wetherow

 

2003 David and Faye Wetherow ! CommunityWorks

 
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