by Nathanael Welch

My brother is profoundly intellectually disabled. He has been diagnosed with cerebral authorpalsy, epilepsy, is on the autism spectrum and has several mood disorders. What all of this means practically is he requires an immense amount of care. He needs assistance with walking and standing (we use a wheelchair for everything not just around the house), he cannot feed himself or provide basic self care (cleaning, bathing, using the restroom), and is unable to communicate linguistically (he can make some noises – grunts, groans, laughter – but cannot use words). I bring all of this up because I want to reflect on some of the central ideas in Thomas Oord’s The Uncontrolling Love of God as it relates to my experience taking care of my brother. Hopefully this will help to bring some of the issues surrounding disability and theology into greater visibility.

“But because God necessarily gives freedom, God could not unilaterally prevent [an evil]. To do so would require removing free will… which a loving God who necessarily gives freedom cannot do.”

An essentially loving God cannot take away free will, but what about those who are unable to express or utilize their free will? My brother is unable to exercise his God-given free will without the agency of another. That is a big responsibility, especially for people who aren’t very good at exercising their free will in self-giving and others-empowering ways.

It is difficult to know if my brother has access to free will in the same way I do. He isn’t, because of the limits of his impairments, able to express his free will on his own – he relies on others to do that for him. Is it possible for me to express both my free will and my brother’s simultaneously? That is, can I use my free will to help him access his?

In any given moment with my brother I try to interpret his reactions, facial expressions, noises, as best I can. I am constantly asking him what he wants to do, ”Do you want to go outside? Or watch TV?” Sometimes he responds by crawling to the door; other times he doesn’t. So we go outside. “Now what? Do you want to play with the ball, or go for a walk, or go somewhere else?” Sometimes how I interpret his response to my questions seems to make him happy; other times it doesn’t.

I wonder if I ask these questions for his benefit or for mine. Is he really understanding what I am asking? Am I really giving him the opportunities he wants or am I just trying to make myself feel better? There is no way for me to know with certainty.

So the question Oord’s book brings up for me is, how can I love my brother in a self-giving, others-empowering way? This is the question that keeps me up at night. If God’s love is essentially kenotic, what does it mean for my brother? If I were to perfectly manifest God’s love would my brother even know? These are questions I’m sure most people ask, but they take on a different significance when considering persons with disabilities.

Oord writes,

“Self-giving does not make God literally selfless… God doesn’t lose the divine self when giving… Self-giving love only sometimes involves self-sacrifice… Love decenters self-interest, but it does not destroy it.”

When I first read this I must admit I wasn’t so sure I agreed. The idea that self-sacrifice doesn’t mean giving up your self entirely, but there is a limit to it, contradicts moments I’ve had with my brother – despite not knowing with certainty how he feels or what he thinks. Those moments are almost impossible to describe, moments where it felt as if the line between me and him disappeared completely – moments where I stopped being a ‘self’ in order that he might be. That can sound bad, as if I’m suggesting he wasn’t a person already. What I mean is  in some way I emptied myself of my personhood in order for his to come through in a way that isn’t possible on his own.

So while I was initially turned off from the description of God leaving something behind in the self-giving, perhaps there is some truth to it, but not in a way immediately obvious to me.

There is a better way of explaining the experience than to say I stopped being a ‘self’ so my brother could be, because clearly that isn’t true. Perhaps a better way to say it is, in those moments, my life was not about me – my life was not my own. I didn’t exist for me. I was still present in those experiences but in the background. I’m grateful for a recent exchange after one of my blog posts reminding me of this. Maybe that’s why it seemed like I stopped existing – I wasn’t focused on me but on someone else completely. This isn’t to say I have done, or will ever do, this perfectly. Rather, those moments with my brother have taught me we cannot exercise our free will to love in a self-giving, others-empowering way, without the help of others.

2 thoughts on “My Life Is Not My Own

  1. I love your conclusion: “We cannot exercise our free will to love in a self-giving, others-empowering way, without the help of others.” I worked as a speech-language pathologist for 16 years before becoming a United Methodist pastor. The importance of giving others opportunities and space to initiate, respond, and choose is paramount. I see life as a conversation and God as a conversational God. Most of our communication is nonverbal and we both give and receive simultaneously. Love is inherently a mutuality. To your questions I would say yes. There is mutually beneficial life and love between you and your brother irrespective of how much he understands.

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  2. Nathanael – What a deeply personal reflection, thank you. You might find Nouwen’s last book, Adam: God’s Beloved an interesting read. It is Nouwen’s thoughts, just a year before his death, in regard to taking care of a severely handicapped young man at L’Arche. He found that this man, who needed total care, became his “friend, teacher and guide.”

    On a side note, in regard to God’s relating to your brother, I believe that God knows how to speak to such individuals (maybe even preverbal children as well) in ways that are meaningful for them. I think heaven will be a reflection time for your brother recalling all the times that God spoke to him and you were an instrument of God’s love, flowing right along with how God was speaking.

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