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?

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • DaveP

    > How do you respond to assertions that those living with certain conditions are somehow stronger or more special than the average person?

    I think that’s true. Mathematically, people “living with certain conditions” are “more special” than people who are average because there are fewer people “living with certain conditions”. And while those “certain conditions” may or may not make the individual who has them “stronger”, I think they make the human species stronger in two different ways. 1) Genetically, people with certain conditions are maintaining genetic diversity by adding/testing/maintaining genes that are not average, and 2) socially, people living with certain conditions sometimes develop alternate social behaviors that turn out to be valuable not only to them but to the rest of society. For examples, world-famous violinist Itzhak Perlman and world-famous writer Ellen Painter Dollar. :)

    > To the idea that God might even choose people to live with particular disabilities for some greater purpose?

    I don’t think so. I think it’s evolution and random mutations, and then the people who are born with the disabilities finding ways to cope with them, which average people might view as a “greater purpose” simply because no one who was average would have the motivation to pursue that purpose. I don’t think Itzhak Perlman would have become a world famous violinist if he could have been running and playing outside with the more average kids, instead of watching them through the window while he practiced.

    > To images of people with disabilities, like those that Stella Young discusses in her essay, that are meant to inspire?

    There are even more images of people without disabilities that are meant to be inspirational, so I think everyone feels the pressure to perform. And since there are more average people, the “inspired” activities can make a lot more money: like TV commercials that hope to inspire average men and women to find true love by buying a certain brand of deoderant.

    > 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?

    I think that’s overthinking life too much! I’ve been thinking about my own philosophy for about 2 seconds, and maybe it would be: here I am, might as well amuse myself.

    And personally, if I was Hans Reinder, I would change my first name to Rudolph. :)

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

    I wouldn’t have realized that you were disabled in any way if you yourself hadn’t posted about it (I think I first posted on your blog in order to correct your opinions on gun control :) ). Same with the other posters here who’ve said they have various disabilities. So on the internet, you can be “just human” if that’s what you really want to be. Or you can be a sweaty 300 lb prison inmate named Larry. :)

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Your last point speaks to the difference between identifying as a person with a disability and being admired because of a disability. Obviously, I identify as a person with a disability publicly, and call on that identity as a primary one when I write. That’s different than being admired for having a disability–something I dislike and try to avoid. I’ve actually had people say to me, “I admire you so much!” when all I’m doing is the normal work of raising children and running a household. The implication seems to be that someone with a disability who manages to get out of bed and live, rather than wallowing in misery, is admirable. While I think anyone who raises children even semi-competently should be admired to some extent (it’s a hard job), I don’t think I should be admired more than others because I do so with a crooked and sometimes hurting body.

  • Jeannie

    Aw, crap — my doctor told my husband and me last week that we were saints. Now you tell me we’re just ordinary like everybody else. Thanks a lot! ;-)

    Seriously, this is a huge issue. Canadian journalist Ian Brown (who wrote The Boy in the Moon about his son Walker, who is very severely and painfully disabled) and his wife , journalist Joanna Schneller, truggled with the idea of their son’s purpose, since his life often seemed to them so sorrowful and lacking in meaning. While some of Walker’s caregivers felt that his life brought purpose and joy to THEM, Brown & Schneller expressed a lot of discomfort with the idea that someone’s role in life was to give other people purpose. (But of course it is very difficult & even a bit scary for us to determine “from the outside” that someone else’s life has/does not have meaning and purpose in and of itself.) Very recently I talked to people at my church who said they felt MY son had a purpose of bringing joy to others — something I can accept more easily because I see how he experiences a lot of joy& meaning. I have no conclusions here other than to say that I agree that if life’s goodness is based on our choices, we’re in a lot of trouble. Thank God for gift, which I guess is just another word for grace.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I thought Ian Brown’s book was genius. We talk so often on this blog about how you can hold two, sometimes disparate, ideas at once. I appreciated that Brown rejects the idea that Walker has some God-given purpose to enrich other people’s lives, but at the same time writes eloquently about how Walker has changed him and others in profound ways, in ways that are enriching and enlightening.

  • http://wayofcats.com WereBear

    Of course we don’t want “additional” hurdles along with the “usual” ones. Where the lines get drawn is something I hope each person can decide for themselves; if they can.

    My own husband deals with a disabling illness. We have to carefully plan outings so as not to drain his limited energies. Much of my life centers around our home, where we spend most of our time. I’ve been told I’m an “inspiration” but thanks, but no thanks! Like anyone, I don’t want the additional hurdle of being considered super-human. Just human is enough trouble.

    Much of the time people are surprised that this didn’t come to me in the midst of a “normal” marriage; that I knew about his illness going in. But it doesn’t matter.

    As I tell them: Everybody has something.

  • http://Timfall.wordpress.com Tim

    Well Ellen, you do inspire me but it has nothing to do with OI. You ask the tough questions and challenge my thinking. That’s inspiring.

    Tim

  • Marcie

    I’ve struggled in a very different way – I had polio at 3 1/2 months old in 1951 and was diagnosed with post polio in 1983. I was in counseling for something totally unrelated to my disability but mentioned in passing being thought “closer to God” by other people. My counselor related a story by Corrie ten Boom, she said that when people idolized her for her role in saving Jewish people in WWII and being in a Concentration Camp, she considered each of those “compliments” as a flower. At the end of the day, she had a beautiful bouquet of flowers to offer to God. So, now, when people say something, I thank them and give the flower to God. I certainly know He’s more deserving of bouquets than I am.

  • Kristen B

    Spirituality is a very personal thing–developing your relationship with God should be a lifelong quest.
    I always try to strive and be as Christ like as possible in my daily life. This helps me remember what Christ is all about (at least to me)–finding the beauty in life and extending a hand to everyone I can that faces more difficult struggles than I.

    Being human is beautiful. Never forget the beauty in the simplicity of it!

    It reminds me of this video I recently came across– it’s a cute little song about how Jesus and his followers actually Occupy Jerusalem.
    Anyways, here it is: http://youtu.be/a6akkb_afqs
    Which, it has a point.

  • Ginny Henderson

    Ellen, I’ve just stumbled into your blog and am captivated for several reasons. I also face life as an adult with O.I. I’ve felt for several years that God has placed raising children and also possibly adoption (sometime in the future… I’m a young single person without a particularly stable job) majorly on my heart. When I was a child, someone placed the idea in my head that I might consider adopting someday, for the sake of avoiding raising children with my disease. At the time, that idea made plenty of sense, and honestly I can still see plenty of reason behind that plan. Currently, years later, I feel like God had placed it on my heart to start thinking and praying about how I might be involved in showing His mercy to unwanted children, probably by means of working alongside or supporting adoption ministries at some point. Anyways, I’m just a kid with big ideas and little experience in dealing with complex issues such as these, but I’ve found the issues that you raise and thoughtfully address to be incredibly insightful and true. I plan on getting my hands on a copy of your book as soon as possible.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Hi Ginny. Thanks for stopping by and introducing yourself! It’s always a pleasure to connect with others living with OI. I’d love to correspond more once you’ve had a chance to read my book. Looking forward to more conversation!


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