Being Together

Being Together

The experience of being with people with disabilities can reawaken an awareness of the deeply human condition of vulnerable interdependence.
An illustration of a crowd of human cut-out figures in many different colours
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Image by Gerd Altmann from Pixabay

I remember vividly a conversation from several years ago. I was “encouraging” my son Chris to keep attending a particular social skills program for young adults with developmental disabilities. He had been expressing frustration about this program for some time, but I persisted, assuming that I knew what was best. In this instance, however, he looked at me with clarity in his eyes and stated calmly, “Dad, this is not about your way, but about my way; and I know what I need here, and it’s not this.” I sat back, shocked, but suddenly made aware of my own presumption to “know better” and perceive him as “needy,” said, “You’re right!” It was one of those watershed moments. In moments like this and many others, the effects of being with Chris have transformed my life, my faith, and my theology.

I could not imagine things being any different. And at the same time, things have been difficult. Being a parent with a son diagnosed on the autism spectrum is something I neither expected nor was prepared for. But Chris’s life radiates with its own unique beauty and preciousness, and continually calls me into ways of being in relationship with him and others that honour the gift of life together.

Being with Chris has helped me pay attention to disability as a part of life in God’s good creation. Diminishing views of disability as “abnormal” miss the point. Rather than a deficiency to be erased or remedied, disability simply is—a natural part of being vulnerable and interdependent creatures. And more, theologically framed, this affirmation reflects the biblical account of creation as loved into being by a God who bears and carries us close, whose own divine image sparkles in many different embodied and fragile earthen vessels. Disability does not sum up Chris’s life, nor mine with him. Being human together does.

Unlike what has sometimes been said to me by otherwise well-meaning people, Chris’s disabilities are not somehow a “gift” or “special.” Claiming so would be an attempt to make meaning at his expense, using his disability as an object onto which other assumptions and desires are projected. Honouring Chris, for me, often means acknowledging how I am mistakenly informed by social judgments about what counts for a “normal” and “healthy” life. Chris’s own uniqueness punctures these illusions and summons me into a different space. So being a parent raises questions and unsettles me in ways that resist comfortable stories or tidy theological packaging. And this animates my desire for social change.

I often struggle to be an advocate and ally for Chris in a society that is set up in ways that privilege certain kinds of bodies, neuro-typical and “able.” There are constant exclusions, and not enough resources to support Chris making his way and flourishing as a young adult with autism. North American society is constructed around a cult of normalcy that prizes ideals of autonomy, efficiency, productivity, happiness, and calculative rational thinking, among other things, and effectively ritualizes these into everyday life through media, education, the market, and even church. People become valued in narrowly defined ways, meaning that some do not measure up. It is this process that sets up the “normal” and thereby produces disability as an “abnormal” difference.

When understood critically, disability exposes the flawed architectural and attitudinal frameworks propping up our social world, which would deny and forget that vulnerable interdependence is the real normal. Being an advocate with Chris has underscored this point, and everything looks different, including my theology.

Theology is a calling into which all believers are invited, as faith naturally seeks to understand and deepen its lived significance in the midst of and responding to particular circumstances and contexts. Chris’s presence summons my response. And in this, theology has been a way of trying to reflect God’s love, wisdom, and justice, drawing out resources for critiquing, resisting, and transforming what counts against this and the goodness of creaturely and communal life.

After all, church is a vulnerable communion of life in Christ.

—Tom Reynolds is Vice Principal and Associate Professor of Theology at Emmanuel College, University of Toronto, and is author of Vulnerable Communion: A Theology of Disability and Hospitality.

This article was originally published in the Spring 2019 issue of Mandate magazine.

 

 

The views contained within these blogs are personal and do not necessarily reflect those of The United Church of Canada.
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