Ruby is sitting in a high backed chair, on top of a pale pink cushion. She is twiddling a mechanical (always and only the mechanical, not the Ticonderoga) pencil in her left hand, and her gaze is fixated upon it, as usual. You can tell she’s happy to be here, because she grins and giggles between the slight rocking motions.
Her instructor Lili begins reading the lesson for today. The topic is the musician Sixto Diaz Rodriguez, whom I had never heard of before today. She reads quietly about his history, his unexpected popularity and then pauses.
“Ok,” she says as she skims the lesson, “let’s spell….‘wildly’”
Ruby knows what to do. I can tell by how she shifts and lifts up her right arm. I watch as she works to point with her first finger. Her instructor lightly supports Ruby’s elbow, reminding her to keep it upright.
“And the first letter is?”
And we’re off. Ruby knows what letter she needs and glances at the board. Her eyes return to her fiddling pencil and Lili is ready with all of the instruction and encouragement she needs: I can see your finger is pointed, shift your eyes shift your eyes shift your eyes, head up head up head up, that’s it, get it (the letter), shift your eyes, get it get it get it get it get it….
Ruby looks and purposefully pokes at the W.
“W. And the next letter is?” Lili’s voice is quiet, almost sing-song, as she picks up the correct letter board. Ruby is currently on three letter boards, A-I, J-R, and S-Z. The orange letters are similar to little plastic magnetic toy letters we find in our kitchens when our toddlers are underfoot. Lord willing, she will move onto one letter board, A-Z, and then onto a keypad afterwards. Lord willing. I say that a lot. And I pray He wills, a lot.
“I. And the next letter is?”
In between letters, there is a lot of coaching. Feet flat on the floor. Sit up straight. Switch the pencil back to your left hand. Lift your left hand, switch the pencil. And the letter is? Point point point point point point….
“L. And the next letter is?”
I remember our first meeting, just a couple of months ago, when over the hour she spelled out the word “viking” right in front of me. Lili never repeated the word, not even once. There was no “remember the word we’re working on?” or “again, we’re spelling viiiiiiiiiking.” There was an assumption right from the beginning that (a) she heard it the first time, (b) she remembers, and (c) she knows how to spell it.
Befuddled, I asked, “How does she even remember what the word is?”
And that was my first lesson on “presumed competence”.
Ruby has Down syndrome and has had many, many therapists and doctors. Not one of them spoke to her directly as if she would understand. All of them, all of us, treated her as if she had the understanding of a toddler, because, after all, she was still mostly nonverbal. If we were going somewhere, someone might mention to her thirty times to get her shoes. Because she was slow. Because she obviously didn’t understand. We equated slowness with lack of understanding. How miserably wrong we all were.
“D. And the next letter is?”
How did we end up in this miraculous world of spelling to communicate? I recently saw the interview Del Bigtree did on The Highwire with J.B. Handley, whose 17 year old autistic son gained open communication skills for the first time in his life, through spelling. In fact, the entire program is called “Spell to Communicate” because that is, in fact, what his son Jamie and so many others are actually doing now. But you would never know it if you made a judgement solely based on mannerisms or physical abilities. Most people still don’t know the agony these people go through being treated like they are incompetent, or unintelligent.
Sometimes Ruby needs to get up and bounce a few minutes on a big red ball. Sometimes she needs to shift back into position on her chair, which Lili slowly and with enormous patience coaches Ruby through: Lift up your left foot, lift lift lift… now put your left hand on the chair to shift back over…. She never tells Ruby “no” and Ruby has never gotten a letter wrong. Sometimes the minutes between letters is excruciatingly long (for me). Instead, what Ruby hears a lot of is “you got this”. And it’s hard not to believe that when she’s spelling words right in front of my eyes.
“And after D is? (Ruby points) L. And the next letter is?”
Ruby has a lot to think about and manage to do this, and it is extremely hard work. Here is a short list:
keep her body in the room
sit on the chair
sit up straight
feet, both of them, flat on the floor
head up
head in the middle
shift the eyes to the board
keep the fidget pencil in the left hand
lift the right arm
keep the arm up
point the first finger
keep the other fingers back
look at the letter
point and then touch the letter (while looking at it)
And we haven’t begun thinking about the actual word and how to even spell it yet.
I recall asking, “How does Ruby know how to spell these words?” Words like Detroit, Wilt (Chamberlain), legacy, health, Sydney, inspire, devoted, China, chain, families, guitar, and reflection?
I’ve learned that for all of her life, Ruby and other nonspeakers have been soaking everything up like a sponge, receiving receiving receiving because their expression has been hindered. Like a blind man with acute hearing, words from everywhere have been implanting into her brain. For all I know, she probably has known how to read since she was four. That’s what other nonspeakers, now openly communicating, say about their own experience.
“And Y. Exactly right.”
Ruby gives a little giggle and rocks a bit on the chair. She is not only spelling at this point, but answering what are called “green questions”. These are questions from the lesson read, most of which I myself do not recall what the answer might be because the passage was read so quietly and perhaps ten minutes ago. An example was from the lesson on Rodriguez: “He poetically (what) the grittiness of life in his neighborhood.”
I only knew the answer after I watched Ruby spell it out: depicts.
I know God’s ways are mysterious and His timing is perfect. I know that intellectually, mentally, emotionally and spiritually. But to see what is unfolding in this small unremarkable rectangular room with the buttercream walls and the enormous peace lily in the corner feels somewhat akin to watching the burning bush in the middle of a desert. Like Job, I have heard of thee by the hearing of the ear: but now mine eye seeth thee (Job 42:5).
I’m looking forward to hearing what Ruby has to say, and to continue watching God’s glory unfold through her life.
HERE is the interview that introduced me to S2C.
God blessed us with a practitioner only 50 minutes away.
Yes, I’m a fan of The Highwire. Highly recommend!
HERE is where you can read all about JP’s son learning to communicate. I promise you, it’s a riveting read.
HERE is a documentary just released about S2C. Definitely worth watching.
And, in case you were curious, here is some information on Rodriguez. His story is so fascinating!
Wow, so well written - as always. This is perfectly communicated. You have shared an experience that will greatly help me understand the people I serve.