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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: http://www.easterseals.com/site/PageServer?pagename=ntl_etiquette

Dear Baby,

I am so excited to hear you will be meeting everyone soon. I know you truly are a gift to your family and everyone that will love you well (especially your big sister). Your parents are some of the best people I have come across, and they couldn’t deserve to have you in their life more. I am overwhelmed by the incredible possibilities and potential that lay in your tiny body. I pray for health and rest for you, your mom, your dad and your sister over the next few months.

“You are a child of the universe, no less than the moon and the stars.”

So welcome, dear child.

We arrived home from vacation on Tuesday evening, I was in the house for Wednesday and Thursday, and then Friday I took off for Halifax for the weekend with my friend Laura who flew in from Ontario. Halifax is a superb city.  Our legs are sore and tired.  It was a whirlwind of a visit, but we’re used to that kind of travel (we attempted to see as much of New York City as possible in twelve hours two summers ago).  The nice thing about traveling with little or no agenda is the chances you get to chat with people along the way and the flexibility you have to go with the flow.  All in all, I’ve thoroughly enjoyed this city.

I’ve made a very difficult decision in the past few weeks, to return home to Ontario at the beginning of September.  L’arche has been a place of shelter for me in many ways, and provided such great opportunities to learn about living mindfully and loving well.  The friends I have made here have enabled me to see all people in a new light.  I could not have asked for a better place to spend my summer.

So I look ahead with a lot of uncertainty.  I know that my approach to life can continue in the same vein, I can continue to write and reflect on my relationships with people and with nature.  I can continue to contemplate my place in history, the unique opportunity I have to experience life like no one else does and try to share it in articulate and insightful ways.  And I can continue to be open to learning from the unique ways that others experience their lives and articulate those experiences, recognizing that in the same breath our experiences are both profoundly common and intensely unique.   I can remember that communication is deeper than language, that rootedness comes from understanding ourselves, and that grace and patience can be cultivated.

Moving back to Ontario is slightly nerve-racking.  I left five years ago for Katimavik and though I’ve been home frequently for summers and holidays, I truly thought the East Coast had become my home.  There are people I love in Ontario who I want to be nearer to, but the pace of life and the pressure to endlessly consume pushed me east where there was much less pressure to have the prettiest cell phone or live in the biggest house.  Yet, in some way, I look forward to challenging the small gods of materialism in my own life.

I don’t have a whole lot of direction, other than recognizing my need to spend quality time with my family and friends in Ontario, to finish that last pesky course for university, and to find a job that will provide me with the same sense that my life has purpose and meaning and the work I do is for more than just a paycheck.  And I am hoping to have time to research and invest in the social justice issues that I have become increasingly aware of and passionate about, including the right to meaningful work and deepening relationships for people with developmental disabilities in Canada.

I am reminded again of the beautiful words of Jean Vanier:

“Whatever their gifts or limitations, people are all bound together in a common humanity. Everyone is of unique and sacred value, and everyone has the same dignity and human rights. The fundamental rights of each person include the rights to life, to care, to a home, to education and to work. Also, since the deepest need of a human being is to love and to be loved, each person has a right to friendship, to communion and to a spiritual life.”

 

Judyth Hill

Wage peace with your breath.
Breathe in firemen and rubble,
breathe out whole buildings
and flocks of redwing blackbirds.
Breathe in terrorists and breathe out sleeping children
and freshly mown fields.
Breathe in confusion and breathe out maple trees.
Breathe in the fallen
and breathe out lifelong friendships intact.
Wage peace with your listening:
hearing sirens, pray loud.
Remember your tools:
flower seeds, clothes pins, clean rivers.
Make soup.
Play music, learn the word for thank you in three languages.
Learn to knit, and make a hat.
Think of chaos as dancing raspberries,
imagine grief as the outbreath of beauty
or the gesture of fish.
Swim for the other side.
Wage peace.
Never has the world seemed so fresh and precious.
Have a cup of tea and rejoice.
Act as if armistice has already arrived.
Don’t wait another minute.

Well, that’s it.  Vacation is over.  It was so incredibly good.  Far beyond what I could have hoped for in a vacation.  So I take a deep breath and I close my eyes to sleep tonight unsure of what tomorrow brings, which is, I suppose, true about any day.  I end vacation tired and satisfied.

We’ve had a dishwasher while here in Saint John (and have enjoyed making full use of it, despite some pangs of guilt).  Candice found the following passage in Miracle of  Mindfulness by Thich Nhat Hanh. It seems so appropriate in light of the pending return to a life with more daily responsibilities than I am use to carrying.  It reminds me that I must learn, again and again, to live present in each moment. It would be so easy to look back at vacation and wish for these days again, because they have been so enjoyable.  For that matter, it would be so easy to look back at my time at SSU, or at home with family, or my childhood and long to be there again.  At the same time, it is so easy to worry about coming changes, the future, my “life plan”, where the heck I’m going and on what road.  But all of that distracts me from the opportunity that is here and now.  The opportunity to learn, grow, develop, enjoy, breathe, digest.

This is a long quote, but well worth reading.  Especially if you, like me, have a lot of dishes to wash.

Thirty years ago, when I was still a novice at Tu Hieu Pagoda, washing the dishes was hardly a pleasant task. During the Season of Retreat when all the monks returned to the monastery, two novices had to do all the cooking and wash the dishes for sometimes well over one hundred monks. There was no soap. We had only ashes, rice husks, and coconut husks, and that was all. Cleaning such a high stack of bowls was a chore, especially during the winter when the water was freezing cold. Then you had to heat up a big pot of water before you could do any scrubbing. Nowadays one stands in a kitchen equipped with liquid soap, special scrubpads, and even running hot water which makes it all the more agreeable. It is easier to enjoy washing the dishes now. Anyone can wash them in a hurry, then sit down and enjoy a cup of tea afterwards. I can see a machine for washing clothes, although I wash my own things out by hand, but a dishwashing machine is going just a little too far!

While washing the dishes one should only be washing the dishes, which means that while washing the dishes one should be completely aware of the fact that one is washing the dishes. At first glance, that might seem a little silly: why put so much stress on a simple thing? But that’s precisely the point. The fact that I am standing there and washing these bowls is a wondrous reality. I’m being completely myself, following my breath, conscious of my presence, and conscious of my thoughts and actions. There’s no way I can be tossed around mindlessly like a bottle slapped here and there on the waves.

In the United States, I have a close friend named Jim Forest. When I first met him eight years ago, he was working with the Catholic Peace Fellowship. Last winter, Jim came to visit. I usually wash the dishes after we’ve finished the evening meal, before sitting down and drinking tea with everyone else. One night, Jim asked if he might do the dishes. I said, “Go ahead, but if you wash the dishes you must know the way to wash them.” Jim replied, “Come on, you think I don’t know how to wash the dishes?” I answered, “There are two ways to wash the dishes. The first is to wash the dishes in order to have clean dishes and the second is to wash the dishes in order to wash the dishes.” Jim was delighted and said, “I choose the second way—to wash the dishes to wash the dishes.” From then on, Jim knew how to wash the dishes. I transferred the “responsibility” to him for an entire week.

If while washing dishes, we think only of the cup of tea that awaits us, thus hurrying to get the dishes out of the way as if they were a nuisance, then we are not “washing the dishes to wash the dishes.” What’s more, we are not alive during the time we are washing the dishes. In fact we are completely incapable of realizing the miracle of life while standing at the sink. If we can’t wash the dishes, the chances are we won’t be able to drink our tea either. While drinking the cup of tea, we will only be thinking of other things, barely aware of the cup in our hands. Thus we are sucked away into the future —and we are incapable of actually living one minute of life.

 – Thich Nhat Hanh, Miracle of Mindfulness

When I was a camp counsellor, I used to do Roses and Thorns with my campers – a way of reflecting on the day and saying this was the best part of my day, and this was the worst (or the thing I enjoyed most and the thing I enjoyed least).  Looking back it’s funny how related this practice is to the prayer of examen – an idea I’ve recently come across and began practicing as often as I remember (which isn’t very often).  I had a wonderful reminder on Sunday of the significance of this practice, of taking the time to weigh both the good and the bad of the day, with gratitude and an acceptance that both are what create life.

Monday was a difficult day.  Monday, in my opinion, would have been the perfect day to stay in bed and ignore the world.  My ideal Monday would have began at 3pm after sleeping all morning and most of the afternoon, at which point I would have watched a movie, maybe found something to eat, slept again till 10pm and then complained to myself for sleeping all day and not being able to sleep at night.  It would have been nice.  Instead, I spent Monday at Irving Nature Park and it was much too buggy.  There were too many children running about.  Too many happy smiling faces that were interrupting my grumpy day.  So I gave up on the walk, found Trevor and Candice (who were most certainly having way too much fun biking through the park) and we decided that Coralee, Sandy and I would go shopping instead and meet up with them later.  Except Monday was a holiday and the stores were closed.  By the time we got home it was time to meet up with two friends who were coming into Saint John to whisk me away from the chaos of a very full house for supper.  And of course, it was lovely to see them, but I was so frustrated by the beginning of my day and so caught in the headspace of chaos and feeling so guilty for wanting to be ‘free’ from the group for awhile that I couldn’t really relax.  I got back to the house and sneaked away to ‘do homework’ which actually meant fall asleep.  By the end of the day I wished it hadn’t begun.

Tuesday, another day that I began feeling equally as tired, was surprisingly much more enjoyable.  And it wasn’t a bump free day.  But something was different… maybe it’s just that I was committed to spending the day with my group and that commitment made it easier to roll with the group as they flexed and adjusted to the schedule.  I think there are at least two or three lessons here.  I’m not sure I can articulate them well, but I will try.

The first is that these relationships I am forming are not relationships of dependence.  It is true that I assist Coralee and Trevor and Sandy with various things throughout the day, but there are so many things which I also need assistance with.  These relationships are ones of interdependence.  This changes my role in the group.  I am here as a participant, not as a staff person.  And the things which I need assistance with are various and probably innumerable – learning forgiveness and grace (a gift of Coralee’s), finding something I’ve misplaced be it the car keys, or a car, or a person (a strength of Trevor’s), learning the depth of non-verbal communication (a gift of Sandy’s).

Secondly, the structure of our days should be more like a rhythm and less like a routine.  Rhythm leaves room for improvisation, creativity, interpretation, spontaneity and even error.

Third, thinking about wanting to be somewhere else makes it harder to see the gift of where I am.  I think having made a commitment to a moment, a day, a year actually makes it easier to live through the harder days.

And I think all of these come back to gratitude.  And gratitude for both the gifts and the challenges.  One without the other would not create the same opportunities for my own growth and development.  And both are equally necessary and present in each day (I think).

So I am still struggling through some of the hard things about being here.  But I am learning that most often I am frustrated by my own failure.  I am frustrated by my impatience more than by the person with whom I am being impatient.  I need others here to show me how to deal with this.

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