My Identity Vis-à-Vis My Brother


None of us are truly human outside of our relation to the other; true humanness comes from relationship.

There are certainly other ways of understanding humanness and human identity, but I’m a sociologist. This is how I understand it. It is not our problem solving ability or intellect that make us uniquely human. It is our relationship, our otherness in togetherness.Our relationships are fundamental in forming our identity.

This is no clearer for me than when I consider my identity in relationship to my brother, Matthew. For as long as I can remember, I have been known as Matthew’s “big-little brother.” He’s almost four years older than me (with a birthday this Sunday), thus me as “little brother.” But I’m also a good foot taller than him and probably 75 pounds heavier than him (used to be more…he’s gotten a little round over the last several years), thus “big-little brother.”

You see, Matt does not fit the standard definition of “normal.” He’s an incredible human being, but he is certainly unique. He has a form of mental and physical retardation known as Cornelia de Lange Syndrome (CDLS), a condition he was born with. CDLS is a fairly severe form of retardation, much more so than the more common Down’s Syndrome. Matthew has a moderate form of it—which means he’s only about 4’10”, can’t talk, or run, and needs assistance in most everyday tasks. But he does have all his fingers and toes, is completely mobile, and can do many things on his own. He has a bubbly personality (most days), and is just a lot of fun. Opposite his bubbly personality, however, he exhibits some personality traits common to CDLS that are more difficult to live with. Despite his inability to talk, he usually expresses himself well, but in those moments when he can’t communicate something that is bothering him, he engages in self-abusive behavior. For him this means smacking the side of his head forcefully and repeatedly. It’s the way he communicates a range of negative emotions from distress and frustration to sickness and anger. For a period of a few years, as he was becoming a teenager, this kind of abusive behavior was about all we saw from him. It seemed that no matter what we did, Matt was frustrated, angry, sick, or sad — all of which would manifest itself in this severely self-abusive behavior. It was taxing on all of us. There was nothing we could do.

Matt laughing on the couch, at Christmas a few years ago.

He has since stepped out of that phase. A combination of medications calmed him down, but for a while it cost us his gregarious personality too. He’s since grown out of that as well. He still smacks himself when he’s upset, but the smiles have come back too. He still has health issues. We still have to give him loads of attention, but I am deeply aware that I would not be who I am without my brother.

Some of my personality traits are directly related to my experiences with Matthew. Being Matthew’s big-little brother has made me into a person of compassion, commitment, and attentiveness. It’s given me a sense of responsibility and love.Personality traits are one thing…but what about identity? That’s a question on an entirely different plane. On some level, the traits I have because of Matthew have given me my identity in Christ. He’s made me attentive to the subtleties of God. He has given me a

passion for the God who looks after the little guy, the God who is present in suffering.And here’s where I think the intersection lies between my identity and Matthew: God – Matthew – Suffering.

My identity has been formed because of my shared otherness with Matthew in the face of the God who is present in suffering. Yet I don’t know exactly what it is. My guess is, 23 years hasn’t been quite long enough to figure this out.

Trying to take a picture with Matt at Christmas a few years ago. He doesn't always like taking pictures. We're having a good time here!


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