In the fall of 2017 I left my home in East Tennessee and came to the midwest to join a L’Arche community. L’Arche was founded in the 1960’s, in France, as a community for individuals with and without developmental disabilities. It has grown into a worldwide federation of communities still seeking to be a signpost to the world, guiding us to a fuller understanding of what it means to be human and to be humans together in this world. As we grow together in understanding, we live out tensions every day between ideals and reality, between opposing realities, and between who we are and who we long to be.
Saturday mornings are my favorite time during the week at L’Arche. Except that A always chooses pop-tarts over pancakes. I want her to choose pancakes because I want to make (and eat) pancakes. She always chooses pop-tarts.
Since around 6:30am that morning I will have been thinking of how to redirect A from many of the choices I predict she will make that day. While she sleeps in, I formulate options for a structured morning. Since A is usually radiant with energy on Saturday mornings, and she will always want to go to Target and McDonalds, I try to come in with a game plan. I am not opposed to visiting these places every weekend, but her motivations are the same as anyones: impulsive spending and eating.
As a care provider, it’s my job to support her decisions and respect her independence. It is also my responsibility to support her in making healthy choices for herself. This health includes her physical and financial well-being, which are not furthered by weekly spending sprees and fast food. Thus I enter one of the many tensions we live out at L’Arche.
It is not my right to interfere with a person’s autonomy, especially when I am in a position of power over that person. But what is my role when that person’s decisions have, historically, been detrimental to their or others’ well being? People need space to stumble as we learn how to best care for ourselves and others, but where is the line of intervention?.
It is worth elaborating that these weekly negotiations of Saturday morning plans with A are not “how do we not go to McDonalds,” but an attempt to pivot her to the other good things she enjoys. My friends remind me that I enjoy foods other than cereal and that I need frequent walks for my well being, and I can remind A that she loves to walk the zoo and to help with household errands.
Still, as I present A with curated options and think about how to phrase healthy choices to make them more appealing, I have this nagging voice in my head questioning my motivations. I never have to answer to anyone for my whereabouts on my days off. Since I was a teenager I’ve been allowed to walk out the door of my house, go wherever I want, and tell no one. This autonomy has become a great source of relief and joy for me over the years.
Another person I know here in the community shares this deep longing for independence in movement. In his youth, C also wandered the streets of this midwestern city. He shares with us his daydreams of taking trains across the country by himself. C is also inclined to clean up the streets of the city he used to wander, picking up litter and recycling. This inclination to pick up trash usually overcomes any other awareness he may have of the moment, and he has sometimes put himself in imminent danger following his impulses. This side of heaven, those of us who care for him are responsible to help him make choices that are safe for himself and those around him. Sometimes, we have to directly intervene with his choices, in order to preserve his well-being.
At L’Arche we are moving toward being a community of mutuality, where relationships between people are balanced. We also live in the present moment, and to not acknowledge the power difference in many of our relationships would be to put individuals at risk of that power being abused, more often by too much use of it, but also by it’s neglect. We daily live out tension at L’Arche, as we seek to increase the rights and freedoms of those with developmental disabilities, and also to recognize and meet the unique needs of each individual. For every human being there is often a gap between what we want and what we need.
As I grow increasingly introverted into my thirties, I am more aware of individuals with intellectual and/or physical disabilities who are supported by other people 24/7. I participate in that support and, while I get to walk away, find solitude, and give no account for my whereabouts, I am walking away from those who do not always have this freedom. How would it be, I wonder, if my only solitude could be found within my own mind, and I had to justify every choice of movement I made to others? When C chooses to go for a walk in the neighborhood, someone always goes with him, whether he would choose to have company or not.
This conflict of autonomy is not limited to those with disabilities. Adult children have to take car keys away from aging parents. Ankle monitors and parole officers fence in those who have been prosecuted by the law. Individuals and families sit at borders with little or no voice in their own placement. Forced migrations have been a reality for most of human history and the contemporary world, large scale and down to the individual, and yet I may be quietly resentful if someone nonchalantly asks me my weekend plans, as though my own autonomy were threatened.
There was a day when, standing in front of C as he attempted to enter a four lane road to retrieve trash from the median, I could think of no creative options. All I could do was explain the truth that he would probably be stopped by the police if he went into the road. C paused, leaning on his walker to think, and turned back to the sidewalk, making the safe choice for himself in that moment.
Most of the time I think I need to gold leaf “good” choices and hide other options. “We are out of chips, let’s eat fruit”, I say. Or, “the mall is closed, let’s go for a walk in a park.” Far too often, I rob A and others of the opportunity to work through the consequences of their own choices. The truth is that I daily stumble on either side of wherever that line of intervention is. I interfere too much and do violence to a persons’ perpetually wounded autonomy. Or I lay aside my responsibility and sit with someone as they receive a worsened diagnoses stemming from their own choices.
As we continue to move forward at L’Arche, to more mutual trust and respect and a fuller understanding of what it means to be human, we do so while living in the tensions of reality and hope. The hope is that we will all choose what is best for ourselves with a clear view of the truth. The hope is also that we will learn to trust and understand each other better, especially as we make choices for ourselves.