Language Beyond Words

World Down Syndrome Day 2017 passed on March 21st. This day of celebration and raising awareness is organized by Down Syndrome International to give voice to individuals who aren’t often heard in the mainstream. Although there has been increasing advocacy in Canada for education, opportunities and jobs for people with Down Syndrome, there is still a need for strong advocates who will help others listen to them and work alongside them to build a more equitable society for all people, both with and without disabilities.

My friend Brian Sloan is one such individual. I met Brian when I worked at L’arche Hamilton in 2010-2011, where he shares a home with other core members and the assistants that support them. My wife and I have remained close friends with Brian ever since.

Brian was born with Down Syndrome, a developmental disability caused by an extra chromosome. Down Syndrome can affect a person’s development to a variable degree – some people with the disorder live a very normal life going to school, working at a job and living independently. Others require more assistance.

For Brian, who is in his fifties, he learned from an early age to depend on non-verbal forms of communication and never developed speech. Had he been given some of the opportunities, support and resources that are now available to young children with Down Syndrome, this may have been different, but we’ll never know.

What’s more important is that Brian’s lack of verbal skills does not hold him back from developing close relationships with friends and communicating his desires and emotions. If you ever get a chance to visit Brian, you will instantly discover his incredible ability to help you feel welcomed into his home – most likely by taking your hand and suggesting you spend some time colouring with him. He can be quite convincing and his joy as you colour together will show you the worthiness of this often overlooked pastime.

My friendship with Brian has taught me so much about non-verbal ways of communicating. He uses a moderate number of signs, mostly for activities he enjoys, people in his life, and of course, his favourite foods. But his eyes and his smile communicate so much more than words. I know this when he pulls me close for a hug, when we relax on the couch colouring together, when we’re dancing and laughing along to music, and when I sit with him in silent prayer.

Brian has taught me more about friendship, presence and joy than eloquence could ever express. I forget my fear of judgment when I’m with him and I learn true acceptance of myself and others by his example. He helps me remember that all the ways I communicate with others are important, not just the words I use.

Thank you, Brian, for teaching me language beyond words.


The Boy in the Moon

University ruined my ability to read books.  Before university I could plow through any book in a week, maybe two at the most.  Now it takes me months.  Maybe its because I try to read too many different things concurrently, rather than waiting till I finish one to begin another.  Maybe its because my brain is still fried from all that info they pumped into it at school.  Who knows.

A whopping five months ago I began reading The Boy in the Moon, in which Ian Brown reflects on his relationship with his severely disabled son, Walker.   As I ponder my relationships with the core members at L’arche and my role as discover of their gifts, I reflect on these words.

“What is he trying to show me?  All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own” (3).

“This constant questioning, filtered through Walker – does he mean what he’s doing, or not? – was also a model, a frame on which to hang the human world, a way of living” (39).

“The light her children threw on her life, and the darkness that hovered around them and their future, went hand in hand.  One was not possible without the existence of the other.  The most difficult part to accept was how complex life was, how bleak and at the same time how rich.  [Her daughter’s] mere existence was a form of remonstration, a reminder to look deeper, or at least to be alert.  Who’s to say they’re not happier in their world than I am in mine? And here I am feeling sorry for them because I’m trying to judge them by the standards of the world they aren’t part of.” (144).

“The disabled are a challenge to everyone’s established sense of order: they frighten us, if not with their faces, then with their obvious need. They call us to be more than we ever thought we would have to be” (150).

“Genetic tests are a way to eliminate the imperfect, and all the pain and agony that comes with that imperfection.  I am relieved there was no such test [when Walker was born], that I didn’t have to face the ethical dilemma it may soon present.  Because Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy; an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted.  A test avoids all that, for better or for worse.  But if there were a more adequate system of caring for the disabled, if we were less frightened of them, if the prospect of looking after a disabled child did not threaten to destroy the lives of those doing the caring – if we had such alternatives, would we need a test at all?” (180).

“Walker’s [group] home is run by an organization that offers assisted living at a thoroughly professional level.  But how does one make a professional operation a home as well – a place full of compassion where people are forgiven endlessly?  Walker had a home where he was taken care of, but was it also a family? Would the place he was cared for feel like his home, occupied by a group of friends and measured by the collective inner life created by its residents?” (186).

Quoting Jean Vanier, “We begin in fragility, we grow up, we are fragile and strong at the same time, and then we go into the process of weakening. So the whole question of the human process is how to integrate strength and weakness. You become human by accepting your own vulnerability.  We’re in a society where we have to know what to do all the time. But if we move instead from the place of our weakness, what happens? We say to people, I need your help. And then we create community” (208).

Let Me Be Clear

A forewarning: the disgruntled attitude I am about to express is in no way directed towards you. I’m sure you are a wonderful person.

But let’s get something clear. The adults that I live and work with are, in fact, adults. I am not parenting, babysitting or even care-taking. I am sharing life. I am helping those I live with (be they assistants or core members) in areas where they need help and allowing them to help me where I need it. (Or at least, I am trying. I don’t always do this very well.)

Also, the adults I live and work with are, in fact, individuals. Some of them share common terms or phrases in their medical histories, but that in no way means that they are exactly like any other person.

My frustration comes from encountering a few attitudes that seem to deny both of these facts. On one occasion, a man approached Trevor and I at a church service. He had worked with children with developmental disabilities. He, a stranger to both Trevor and myself, began rubbing Trevor’s back, looked at me and said “I love these people.” If I could shout via email, this would be loud: “Trevor is NOT these people. Trevor is Trevor.” Nor is Trevor a child. Nor is it appropriate to interact with Trevor in a physical way that you would not with any other 30 year old man who is a stranger to you. I don’t know about you, but I don’t go around rubbing strangers on the back.

Another example: A man approached Candice, Rod and Buddy in a restaurant. He said hello to everyone and then turned to Candice to say “It is amazing that you live with these people, I know it’s not easy.” Um, Rod and Buddy both have ears. In fact, they both hear very well. They may not communicate in the way that you are used to, but they both communicate very well. Also, it’s actually not easy to live with anyone. Not only is it amazing that Candice lives with Rod and Buddy, it is amazing that Rod and Buddy live with Candice, or me. We’re not so easy to live with either sometimes. And again, Buddy and Rod are NOT these people. They are individuals, with individual gifts, strengths, likes and dislikes.

Maybe this is counter-cultural, but I believe you can in fact say hello and how are you and anything else you would say to someone you are meeting for the first time directly to a person with a developmental disability. Perhaps someone who knows them better might help you translate your way of communicating into their way of communicating. But you can still talk to them, even if through a translator. If I met an Italian person, I would not say to our translator “how is he doing?” or “what does he like?” or anything like that. I would simply ask the person and allow my question to be translated. Or perhaps the translator could teach me how to ask these questions in Italian. It’s the exact same. Actually, it’s not even the same. Because Rod and Buddy and Trevor can actually understand you. You are the one who needs help understanding.

Please, don’t talk about people, talk to people. Seriously.

We believe we a polite, tolerant, progressive, open-minded nation. Sometimes we treat people like shit. Especially people who are different from us.

I think this is because people who are different than us sometimes scare us. Or maybe it’s just because we haven’t learned how to do things differently.

And a ps: I am still having to learn this. I’m sorry if I sounded like I knew what I was talking about. There have been many times when I have treated Rod or Buddy or Trevor or Mike or Candice like less than adults or less than individuals. In my judgmental attitude I am making the same mistake that I am condemning others for. We all need to grow.

And a pps: I just found this helpful article for those of us who are unsure about etiquette when meeting a person with a disability:

To Make, and Make Again

I’ve been thinking about this quote quite a bit since I read it on a friend’s blog recently:

“My heart is moved by all I cannot save:
so much has been destroyed
I have to cast my lot with those
who age after age, perversely,
with no extraordinary power,
reconstitute the world.
…a passion to make, and make again
where such un-making reigns.”

(Adrienne Rich, Excerpt from Natural Resources
in Dreams of a Common Language)

I tend to be the kind of person who is easily overwhelmed by all that troubles me – both my own struggles, and the things I have learned are part of our human condition.  We live in a world that sometimes seems as if it is driven solely by selfishness, greed, evil.  And we have suffered because of this.  Sometimes we are involved in causing the suffering of others. Sometimes we witness the innocent suffering of people who have done nothing to deserve it.  Often we (or at least I) feel like we don’t know how to do anything to make it better.  Can we make it better? Can we cultivate a passion to perversely make, and make again in a world where such un-making reigns?  To believe in the possibility of love, hope, peace, goodness in the face of suffering?

I ask myself these questions as I sit across the table from a woman who needs me to patiently sit with her while she finishes her breakfast, more than an hour after everyone has finished and left the table.  Can I cultivate patience?  Can I be gentle and compassionate instead of hasty and short-tempered?  Can I learn to slow down enough to see the beauty in this quiet moment, and know that my to-do list is far less important that sharing a meal with my new friend?  Can I continue to sit here with her, making faces and laughing and communicating only through body language, since I don’t know sign language and she can’t hear my voice?  Her smile, with no extraordinary power, reconstitutes the world.

I am learning that language is far more than the words we speak. We’ve all been told this before.  But it is only through living with people who must rely on other forms of communication that I can really learn to listen to all that a person is saying.  We all have our own language… certain expressions, gestures, symbols, words, that we use to communicate our needs to one another.  I have to be patient because I am learning new languages, ones that may not seem intelligible at first, but are as full of meaning as the language that I use, maybe even more so.