Reflections on Language
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
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.
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
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.