Friday, September 16, 2016

the King of L'Arche

This past month, we had to say good bye to one of our core members. After months of chemo, and doing surprisingly well and staying upbeat and active,our friend Pat took a turn for the worse and quickly made his exit. He was a much loved member of our community, having lived in L'Arche Heartland for 27 years - we would actually sometimes refer to him as the King of L'Arche. He was quick with a compliment, always telling people they were handsome or skinny or beautiful, that they needed a raise or a vacation or a thousand dollars. He'd tell people they were good cooks, even if they weren't the ones who had prepared the meal. In fact, the evening before he went into the hospital, which is the last time I spoke with him, from his bed with his blanket pulled up to his chin, and his bare feet sticking out the bottom, he looked at me and said, "You look handsome, Mark. You're as skinny as a horse!"

He also had a good sense of humor. One time, when I was living in the house with him, I was cooking dinner. We had chosen to have these frozen, breaded chicken breasts for the meal. There were cooking instructions on the bag for a conventional oven or a convection oven. In my quick glance at the instructions, I chose to read the wrong ones and cooked the chicken in our conventional oven following the convection oven instructions. We sat down at the table, said grace, and started to eat. I cut a piece off of my chicken and put it in my mouth and immediately knew it was wrong. I spit it out and told everyone to stop eating their chicken right away. "Oh my!" Pat exclaimed. "Mine's pink!" For years afterward, even just days before he died, when Pat and I were around other people, mixed in with his usual compliments would be "Mark's a good cook. He makes good chicken." Everyone would think he was paying me a nice compliment, but I knew, and he knew that I knew, that he was referring to my "pink chicken" as he liked to call it.

Living with him, I got used to the sound of stomping, clapping, and whooping coming from upstairs. His bedroom was in the attic and he spent a lot of his time watching game shows and sports games. He was an enthusiastic viewer, and would cheer for his favorites, clapping and whooping when they did well. He'd also stomp or shout when they did poorly, too. After living with him for about a week or two, it just became part of the background noise of the house.

His singing voice was kind of a surprise. I remember the first time I heard it. I had been in L'Arche for about two weeks at this time, and we were at our annual Faith and Sharing retreat. We were getting ready to sing some songs, and Pat and I were sitting next to each other on a couch. The guitars started to play and we began to sing and Pat, who was kind of a bigger guy, busts out in this operatic falsetto singing voice. It actually startled me, and I reacted visibly. Another assistant on the other side of the room from us noticed and she started laughing. Then I started laughing. Pat saw me laughing so he started laughing.

Pat's laugh was something else, too. It was always interspersed with loud snorts, which would always make the people around him laugh harder. I never was sure whether he was doing it on purpose, or not, but I kind of have a feeling that it was on purpose because he liked the reaction that they received. Pat enjoyed making people smile and laugh and feel good.

He liked people, and liked to be social, but wasn't always a fan of large crowds. A lot of times he'd find his way to the back of the room, or to a quiet corner, or even out in the hallway or the parking lot. If you didn't know where Pat was, you just assumed he snuck out early, and then you'd have to go out and find him.

I feel like that's what he did when he died, too. He just snuck out early. He didn't want it to be a big deal. He didn't want people gathering around and making him the center of attention. He just wanted to quietly leave while people were paying attention to something else.

After he passed, we had a Celebration of Life to honor his memory. We sang some songs that we knew he would have enjoyed, and we shared stories and memories about him. There was a lot of purple decorations (it was his favorite color) and pictures of him throughout his life, and his 27 years in L'Arche.

Yesterday, with the help of a few assistants, we finished moving his stuff out of his bedroom. I remember standing in the middle of his room, thinking that this was it. This was the final good bye. I was acknowledging that Pat won't be coming back to this room, he won't be singing or watching tv and cheering and clapping anymore. For the past 27 years, Pat has been a constant in our community. He has known six Community Leaders. He's welcomed several new Community Coordinators. He's seen many assistants come and go. Each one has come to know Pat, to enjoy his singing, to have their spirits raised by his compliments, to laugh along with him as he snorted. It is weird to think of what our community will be like now. It certainly will be a different community without him. But, then again, I am certainly a different person because of him. And I am thankful that I had the chance to journey alongside him for the short time that I did.

Sunday, August 28, 2016

Beautiful and Terrible

A few weeks ago, I went on a road trip to St Louis with four other members of our community. We went to visit some friends in the L'Arche community there, but also to listen to Sister Sue Mosteller give a presentation. Sister Sue is a Sister of St Joseph who lives in Toronto, Canada, and has been a part of L'Arche since the 1960's. She served for a time as the Community Leader of L'Arche Daybreak near Toronto, where she became friends with Catholic priest and author Henri Nouwen. She also was the first International Leader of L'Arche after our founder Jean Vanier. After her presentation, I had the opportunity to chat with her. She asked me a question about if my time at L'Arche was beautiful, and I answered with a very honest, "Sometimes."
"I understand," she answered. "I have always said that L'Arche is both beautiful and terrible."

And she's right. It is both things at the same time.

L'Arche, in its essence, is beautiful. It's a community of people of differing abilities who have come to share life together. It's the strong helping the weak. It's the weak helping the strong. L'Arche clearly states that we are not out to save the world, but that in our own very small way we are called to be a sign of hope. We are called to show the world a different, more compassionate, more human, way to live.

And I think that's beautiful. Henri Nouwen also believed that it was beautiful. In his book "Adam: God's Beloved" he shares about his own relationship with a core member (L'Arche's term for community members with intellectual disabilities) and how this man who was nonverbal and needed assistance with almost every aspect of his life was a manifestation of Christ, and how his relationship with Adam impacted his own life. That is all very beautiful, and a very real part of what it means to be in L'Arche.

To be a part of L'Arche is to experience that beauty: The joy a core member expresses when his favorite song comes on the radio, or he does a good job at bowling. The unconditional love that is offered, not because you've deserved it or earned it, but just because a core member loves you. Constant comments of how handsome or skinny you are, and how much you need a vacation. The connections that are formed by sharing life with core members, being present with them daily. These are all things that I have experienced, and which have made my time at L'Arche to be a very beautiful thing.

But, sometimes, if we are honest, L'Arche can also be pretty terrible. When you form relationships with anyone, you are opening yourselves up to the beautiful parts of them, but also the not so beautiful parts. If we are honest, we can admit that we all have some not so beautiful parts. It's just that most of us have spent years learning how to cope with them, or to hide them. People with intellectual disabilities are often much more open with and about this part of themselves.

So, sometimes L'Arche can be terrible because a core member acts out in violence towards you or someone else. It can also be terrible when you realize that it is a very human place, filled with broken and hurting people, with and without disabilities. It can be terrible when you find yourself feeling lonely, even though you are constantly surrounded by people.

It can also be terrible when you are unable to help the core members in a way that you want. When you talk with a core member about how he wants to be seen as important and popular, but because of his disability he is ignored or disregarded. Or when you sit nearby as a core member experiences a seizure, knowing there isn't anything you can do to make it stop. Or when one of the core members is given a life altering health diagnosis, and you can only do so much as you accompany them through their sickness and death. And then you are faced with the reality of life in a community that is now different, because they aren't there anymore.

To be a part of L'Arche is to also open yourself up to experience that which is not beautiful. To experience the very real, and sometimes messy, loud, chaotic, troubling, painful lives of people with disabilities. To live day by day, side by side, with people with developmental disabilities (and, let's be honest, people without them, too) is to invite all that they are to be in relationship with all that you are.

And that's where it gets beautiful again. Because you can't have an encounter like that and leave unchanged. Living in L'Arche will broaden your mind, open your heart, increase your capacity to love, change how you view the world, even change how you view yourself. Living in authentic relationships with people with and without disabilities, recognizing that each has something valid and unique and important and special to share - including yourself!! - helps us all to become better, stronger, more compassionate versions of ourselves.

So, yeah. L'Arche is beautiful. But L'Arche is also terrible. It is both things at the same time. And I think that's pretty beautiful.

Wednesday, July 27, 2016

The ADA, Japan, and L'Arche

Twenty six years ago yesterday, the Americans with Disabilities Act was passed and signed into law. This piece of legislation prohibits the discrimination on the basis of disability in the workplace, State and local government, public buildings, transportation, and others. It was a big step forward in the recognition that people with disabilities are people, deserving of the same things as the rest of the world. Yesterday, in Japan, a man wielding a knife killed 19 people with disabilities and injured at least 26 others. It was claimed that he said, "It is better that disabled people disappear." It was a senseless tragedy, and one that we can all agree should not have happened. But if you talk to many people with disabilities, they'll say that they often feel invisible in our society. We live in a world built for and by people of "normal" abilities. Many places we go and things that we enjoy are not accessible to people with mobility impairments. People with developmental disabilities are often put places where they are out of the way, so that we don't have to acknowledge that they exist. Although we wouldn't go so far as that man wielding a knife, people with disabilities often receive the message that it would be better if they just disappeared. This is why I choose to be in L'Arche. Because it recognizes the gifts of people with disabilities. It says that not only are their lives important, but they are worth celebrating. It says that our lives are made better and richer by their presence. It says that we all, regardless of abilities, have gifts to share and are capable of contributing to the world around us. We are all important, we should all be recognized as valuable, none of us should just disappear. What happened in Japan was senseless. It was a horrible act of violence against people of unlimited value and worth. While there isn't anything I can do to change what happened, and not much I can do to ease the suffering of those who were directly impacted, what I can do is embrace those around me who are considered disabled, and let them know that they are not invisible to me. I see them, and know them, and love them.

Tuesday, June 21, 2016

Body parts and community

It's funny how you can take something for granted until something happens to it, and then you realize how important it actually is.

Take, for example, my index finger. Not the one on my right hand, which is my dominant hand, but the one on my left hand. It's not normally a part of my body for which I show much appreciation. I don't even usually think about it all that much.

Until yesterday, that is.

I was preparing supper in my apartment, and needed to open a vacuum sealed package of fish. Rather than walking five steps, opening the drawer, and taking out the pair of scissors, I decided to use the large kitchen knife I had been using to chop vegetables instead. So, holding the package with my left hand, I took the knife and cut through the plastic. It was about that time I felt a sharp pain in the index finger of my left hand. Not only had I managed to slice the plastic holding the fish, but I sliced my finger. And it was a pretty good slice.

I remembered all of the things that I had learned about how to stop bleeding. Things like applying pressure to the wound and keeping it elevated. So I was sitting on the floor of my bathroom doing these things but they just weren't working. I figured I would need some outside help. I grabbed my cellphone and called my friend and co-worker Nicole.

"I cut my finger and I don't know if I'll need stitches," I told her. "Also, I don't have any band-aids."

She came to my apartment bearing gauze and medical tape. She took one look at my finger and said, "Yeah, you're gonna need stitches." She helped me bandage my finger and then offered to drive me to urgent care.

After receiving six stitches, and a really cool neon green bandage, I returned home to finish preparing my dinner. It was then that I started to realize how important my index finger on my non-dominant hand really is. It was difficult to hold things, or to wash dishes in the sink, since I can't get the bandage wet. I kept bumping my finger into things, which would give me a fairly painful reminder. Buttoning up my shirt, or buckling my belt, became interesting endeavors. Taking a shower with a plastic bag over my hand, to keep it dry, effectively rendered my left hand useless. Many of my friends have mentioned that I won't be able to play my ukulele for a while. Even typing this blog entry without the use of my index finger is difficult, and results in quite a few typos.

This injury is showing me how this seemingly unimportant body part actually plays a vital part in my life. I am reminded how something that I had taken for granted, and not given much thought to, is actually an important part of my day to day life.

I think we can tend to do this with people. We can overlook them, or take them for granted. We can think that they don't play an important part in our lives and therefore that makes them unimportant. It can be an easy thing to do. But when we do that, when we disregard people, I think we do ourselves a disservice. Because, when we do that, we fail to see the person and all of the gifts that they have to offer. We fail to recognize that they are worthy and deserving of love, just as much as ourselves or anyone else.

In L'Arche, we strive to recognize and lift up the gifts of each person. No matter their abilities or struggles, we choose to recognize that they have something unique and special to offer the world, something that only they can give. It might be easier to disregard or to ignore them, but we choose to lift them up and to build community around them. It is then that we are blessed to see their gifts and how their presence impacts and enriches our lives.

No one is more or less important than anyone else. We each have a part to play and gifts to share. Even if those gifts are harder to see, or not ones that we might readily lift up as important. But when we choose to realize that without each other that our community, our body, is incomplete we open ourselves to being transformed.

21 The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” 22 On the contrary, the parts of the body that seem to be weaker are indispensable, 23 and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, 24 which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, 25 that there may be no division in the body, but that the members may have the same care for one another. 26 If one member suffers, all suffer together; if one member is honored, all rejoice together.
27 Now you are the body of Christ and individually members of it.
- 1 Corinthians 12:21-27