First, thank you—I’ve been overjoyed by the response to ‘A Wish Come Clear’ so far.
Next, I’d like to share good news with you—a post I wrote about minimalism and life at L’Arche is going to be featured in Francine Jay’s Miss Minimalist! The post won’t run until April 4 (I’ll post a link at that time.) Meanwhile, check out her site and look forward to reading about how minimalism and L’Arche meet and marry 🙂
I’m looking forward to crafting a contribution to Amy Julia Becker’s blog Thin Places as well (in the guest column, ‘Perfectly Human’), as I’ve been invited to post there. Stay tuned!
In thinking about what to share on this post, I realized that my relationship with my brother, Willie, is central to everything I know about disability. As such, Willie is the star of tonight’s show. I know that I never would have come to live in the L’Arche community if I were not Willie’s sister. And there’s a need for me to begin at the beginning. For me, seeing disability as opportunity began with Willie.
I should also mention that, at the time the excerpt below was written, there was still a question of whether or not my brother would continue to live with my family. He has struggled with biochemically-based behavioral challenges ever since puberty, so when I refer to fearing him, I refer to the times in which he has struggled with aggressive behaviors. Willie himself has come so far, and he has fought hard against the imbalances that cause him to lash out.
The excerpt details my decision to come to L’Arche after graduating from college, and the sense of call I felt upon arriving there.
I’ve always been slightly jealous of my friends who have a passion to end world hunger or save whales or teach children….Those things matter to me, but they don’t thrill me at the core of my being. They don’t break my heart or drive me forward to act. So I ask myself: What injustices do break my heart? At first, nothing comes to mind. And then…
I remember, and my heart breaks anew. My brother and I going to the same school for a year. People stare at him but pretend not to. Worse, the people who talk to him but speak in baby-talk. The students in my high school who claimed to be ‘friends’ with the special-needs kids. Some telling the truth, but others turning away when they saw ‘them’ coming.
And my family had it easy. Rejection, when we did experience it, was almost always subtle. For the most part, my brother has been accepted and supported by the society in which he grew up. Other children with special needs—in other times, other places—have not been so fortunate. They have been outcast, ridiculed and abused. They have been alienated because they were ‘different’, because they were ‘deficient’ in some visible way. That riles me. It strikes me, hard, and I want to fight back.
And my deepest need? I need to believe that my brother belongs with our family. I need to love my brother instead of fearing him. I’m still waiting for this to be true. And my deepest joy comes when my family is together in the truest sense of the word. At a youth conference, I hear a speaker quote from Frederick Buechner, a theologian I’ve never heard of. This Buechner defines vocation as “…where your deep gladness meets the world’s deep need.” I’m beginning to think that such a place may actually exist for me, in me.
The next day I attend a seminar entitled, “Ministering to the disabled.” The speakers there tell me what I already know: that when God walked this earth, He spent a great deal of time with the poor, diseased and disabled. He lived among the marginalized. He brought healing in (and through) their lives. Furthermore, we are all ‘disabled.’ We all need Him—and one another—desperately. Even though I already know this intellectually, it’s as though my heart learns it for the first time. I can’t stop myself from saying yes. (I don’t even know what I’m saying yes to yet, but I know I’m saying it).
I leave the room with puffy eyes and perfect clarity. I may not know which job to take, but I know which path to pursue. And three months later, I [find myself]….standing on the front steps of the home where [Leo] and five others with intellectual disabilities live. Yet even as I feel my stomach dancing through pre-interview apprehension, I know that these steps will not always feel foreign under my feet.
While I came to L’Arche to give good care, I was so much in need of care myself. I was afraid—afraid that I wouldn’t know what to do, that I wouldn’t be ‘enough’ for L’Arche. I felt as though I hadn’t been ‘enough’ for my brother. My family had tried so many therapies and drugs, and, at that time, none of them seemed to work. And our entire family shared in Willie’s sense of disconnection from the rest of the world. My parents bore up gracefully, and they tried to help Willie participate in their daily lives (work, church, family) as much as possible. Yet I realize how difficult this must have been for them. If your adult son is prone to self-injurious behavior, you take a gamble every time you decide to go out together as a family. You may need to leave church early if he becomes agitated. You may need to pull the car over until he can calm down.
Even against this backdrop, I was fiercely hopeful in coming to L’Arche. I was determined to see if there was a place where people with disabilities were at the center of a community. I wondered if my brother could have a real life to look forward to if he ever moved to a ‘group home’. And, gradually, I realized that my years as Willie’s sister were an asset to me as I began living in community. I could stay calm when another person was having a tantrum. I could relate well with families of adults with disabilities. I could become deeply in-tune with another person’s limits and preferences, and structure my behavior based on what they needed from me.
In short, I had been prepared for the task before me.
What I wasn’t prepared for was the grace I found within the task. I wasn’t prepared to fall in love with the core members at L’Arche, to have their lives so fully interwoven with my own. In the (paraphrased) words of Virginia S, who has brothers with disabilities, “I didn’t know if there was anyone out there who could, or would, love my brothers like I did.” Now she and I both know the truth, and we need not be afraid.
One final note: when I was a little girl, I don’t remember having a firm concept of God, specifically. Yet I do remember having a very clear idea of what heaven would be like. I believed that heaven would be just this: a place where I could talk freely with my brother. It would be a place without the limits of autism on his part or lack of knowledge on mine, a place where I could ask him a question and receive a complete answer. I remember wanting to ask him about the smallest details of our life as kids; I wanted to know if Cheerios were really his favorite cereal or if he ate them simply because that’s what Mom bought. I wanted a window into his mind and heart.