I Don’t Want to Be an Inspiration, I Just Want to Be Human

As the one-year anniversary of my book publication approaches in January, I’m devoting Fridays from now until the end of the year to revisiting the book’s major themes. Each Friday, I’ll post an excerpt from No Easy Choice: A Story of Disability, Parenthood, and Suffering in an Age of Advanced Reproduction, with questions for reflection at the end. You’re invited to respond to the question (or anything else in the post) in the comments. This week I’m featuring a passage on our cultural tendency to hold up those with disabilities and their families as “more than,” as special, gifted, chosen. For another take on this topic, check out Stella Young’s essay on what she calls inspiration porn—”when people use images of those with disabilities as feel-good tools…based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them.”

As [theologian] Hans Reinders has written, “Life is good as it is, not because we chose it, or would have chosen it had there been a choice, but simply because it is what it is.” He defines “two rival conceptions of the human good; one that makes life’s goodness dependent upon ‘choice,’ the other that makes life’s goodness dependent upon ‘gift.’” Until quite recently, human reproduction and our children’s genetic makeup were mysteries beyond our control. In late twentieth-century America, widely available contraception and legalized abortion gave people some limited choices over when they would and would not have children, but they still had no control over what sort of child they would have when the time came. New technologies are changing that, and so a new ideal is creeping into our notion of what makes a good life. We can choose whether to transfer one or two or five embryos; whether to selectively reduce some of those embryos if too many implant; whether to weed out genes that cause OI [my bone disorder], cystic fibrosis, Huntington’s disease, and breast cancer; or whether to increase the odds of having a girl over a boy. With all these possibilities, we begin to feel that we must make the right choices to ensure the best life for our children.

But Reinders points out the futility of equating a good life with one over which we exercise choice. If you ask parents of children with severe disabilities whether they would choose to conceive that child if they knew about the disability ahead of time, both a “yes” and a “no” answer pose problems. If they say “yes,” then they are somehow surrendering to the suffering their child endures, saying it doesn’t matter, when they surely know it does matter. But if they say “no,” then they are saying their child’s life is not good, when they surely know it is good. The answer to this conundrum, Reinders says, is to sever the connection between choice and life’s goodness, to recognize that “if my life were different from what it happens to be, then it would also be good.”

Reinders’s insistence that life is good, no matter what, uncovers another problem with theorizing that “everything happens for a reason” or “God won’t give you more than you can handle.” While people with disabilities certainly need to fight a tendency for others to see them as less than fully human, these platitudes actually portray people with disabilities as more than fully human. In a strange way, they imply that the lives of disabled people are more valuable than other lives; that people with disabilities and their families are stronger, wiser, and tougher than regular people; and that they, in the words of one online commenter writing specifically about Down syndrome, have a “straighter line to God.” Women’s magazines, primetime television shows, and local news spots are full of stories about people with disabilities who are extraordinary. As a child and teenager, I felt anxious and resentful every time I heard one of these stories. I would think, “What I want most is to be a regular person, to be like my friends, to be able to walk, to have boys look at me. But apparently more is expected.” One often-used slogan in the OI community is “unbreakable spirit.” I know its purpose is to separate the fragile body from the inner person, but honestly, my spirit has often been broken because I am a human being, not a superhero. The beliefs that everything happens for a reason, that God won’t give you more than you can handle, or (the one I dislike most) that God chooses special families for special children—these beliefs are easily disproved by reality. When working at the OI Foundation, I came across a photo of a five-year-old with relatively mild OI whose parents kept him lying down in a wagon, in diapers, drinking from a bottle—tell me that God chose those “special” parents for that abused little boy. These assertions also imply that disabled children and their families are better, in some way more valuable, than everyone else, to be chosen by God for this honor. This is a problem if we accept Reinders’s assertion that every life is always good, no matter whether the human being living that life is weak or strong, disabled or robust, petty or bighearted, cranky or joyful.

How do you respond to assertions that those living with certain conditions are somehow stronger or more special than the average person? To the idea that God might even choose people to live with particular disabilities for some greater purpose? To images of people with disabilities, like those that Stella Young discusses in her essay, that are meant to inspire? How might Hans Reinders’s proposal that we perceive our lives primarily as gift rather than choice affect how we live, whether or not we live with an unusual condition or disability?