I’ve been thinking about disability and identity lately. I’ve wondered why many people who live with significant disabilities do not identify themselves as disabled, and even take offense at being called disabled. Yet, other people who live with disabilities not only embrace the term but even talk about “disability pride.”
As I listened to a commentary by Ben Mattlin this morning on National Public Radio, I was struck by the sharp difference between him and the late Christopher Reeve. Mattlin grew up with Spinal Muscular Atrophy (SMA) which prevented him from standing or walking and which has taken away use of his hands over time. He said that he often gets invited to groups who work for some sort of cure for SMA, but he always declines. He insists that he likes himself just as he is, and can’t imagine who he would be if he were not disabled. The late Nancy Eiesland expressed a similar sentiment.
In sharp contrast, Christopher and Dana Reeve dedicated their lives to finding treatments and cures for paralysis caused by spinal cord injury, and their foundation continues that work. You may remember Reeve as the actor who played Superman in several films, and acquired quadriplegia in a horse riding accident. The Reeves fought against Christopher’s paralysis mightily.
As far as I can see from my outside perspective, Christopher Reeve never considered paralysis to be part of his identity, but it seems that Ben Mattlin thinks of SMA is part of who he is.
This matter of embracing disability as part of one’s identity can happen with parents of disabled children as well. A couple of years ago, the adult daughter of some friends of ours died quietly in her sleep. She had lived her lifetime with severe multiple impairments. As my wife and I talked with our friends at the funeral home, the husband said something like this, “Not only have we lost our daughter, we’ve lost part of our identity. Throughout her life, we were parents of a disabled child. That fact defined our decisions, our relationships, and our volunteer commitments. Now we have lost that. We are not parents of a disabled child anymore. We have to figure out again who we are.”
I had never thought about my own life that way before, but it’s true for my wife and me too. The Lord used our daughter who lives with disabilities to shape us and our other children. God led my wife and me into new callings through Nicole. My wife is now a special education teacher, though her training in college was for general education. I have become the Director of Disability Concerns for the Christian Reformed Church, though I'm trained to be pastor of a congregation.
Although most people affected by disability would say that to some extent disability is both a part of their identity and an intruder, I think that most people lean one way or the other. For some, disability is a fact of their identity like being male or being 6 feet tall. For others, it’s an unwanted intruder like fleas on a dog or a mouse in the kitchen.
This distinction even affects people’s ideas about heaven. Ask an “identity person,” and she probably will tell you that she expects to live with the same disability in heaven. Ask someone who never embraced disability as part of her identity on earth, and she’ll tell you that she can’t wait to be freed from it when she gets to heaven.
I don't know what heaven will be like, except that it will be good. For now, while I'm still here on earth, I hope I can remember that different people can respond in very different ways to the same kind of disability, partly based on whether or not they consider it to be part of their identity. I hope that that knowledge will help me better love each person I meet. And love is the closest we'll get to heaven right now.