Thomas, a reader who has the same bone disorder I do (osteogenesis imperfecta, or OI) commented on my contention in Friday’s post that I hate OI. Thomas wrote, “It’s really hard to read this and not feel sad for you…To me hating an almost immutable element about one’s body is kind of living with perpetual hate.” I responded to Thomas in the comments to that post, but thought his point was worth a post of its own. Does hatred of OI necessarily lead to hatred of self? Am I living in a perpetually negative, bitter emotional state? Do I hate my life?
No, I don’t hate my life.
And I don’t think that hating a disorder that causes unpredictable and significant pain and leaves bodies permanently scarred, crooked, and broken is either unreasonable or a symptom of a bitter, angry attitude.
Reader Tim later commented, “I figure hating OI is like hating cancer. Who wouldn’t?” In many ways, it’s just that simple. Except it’s not. Defining disability, contemplating how it intersects with the spiritual and emotional life, pondering the reality of suffering alongside the reality of a loving God—questions like these keep theologians, ethicists, clinicians, and regular folk like me awfully busy.
Here are a few thoughts and observations about why I hate OI but don’t hate my life.
There is a fundamental tension present in life with a disability. This is the very same tension I discussed in last week’s post titled “This is What Love Looks Like.” Ethicist Stanley Hauerwas put it this way: “How are we to rightly regard [people with disabilities] as precious creatures of God and yet wish they might not suffer from their disability?” I put it this way: “How is it possible that I treasure my beautiful daughter just as she is, because I do, and yet also wish that she had strong bones? How is it possible that I treasure my own life, because I do, and yet also know without a doubt that, were I to have the chance to live life without these fragile bones, crooked spine, grating joints, I would gladly take it?”
My hatred of OI is not a perpetual state. It is a usually hidden, even irrelevant emotion that bubbles up in the hardest moments. I don’t wake up in the morning grumbling about OI (although I do wake up very aware of OI, because my first steps each morning are terribly ungraceful, hobbling things due to my severe arthritis). I’ve lived with OI for nearly 44 years now—my entire life—so I don’t actually think about it all that often. My thoughts and emotions are usually centered on the same things that most people’s thoughts and emotions are centered on: What should I make for dinner? Whoops, forgot to wash Meg’s softball uniform for today’s game. Must finish that blog post for tomorrow. And can anyone tell me why the final episode of House was so pathetic?
But when OI punches us in the gut—when it shoves our lives off-kilter with a new fracture and the emotional despair that accompanies it, when a sore and swollen knee awakens the fear that someday I’ll no longer be able to do the physical work involved in caring for my family—then, yes, I hate OI. Passionately.
And I’m not the only one. I have numerous Facebook acquaintances with kids with OI. When one of those kids has yet another broken bone, quite often what their mom or dad has to say about it is, “I hate this disease.” Sometimes with a profanity or two thrown in for good measure.
I am vocal about hating OI because I want to push back against our cultural tendency to romanticize disability. On the one hand, our culture can undervalue people whose bodies and/or minds don’t measure up to cultural norms for beauty, accomplishment, and strength. On the other hand, we put people with disabilities, and their families, up on pedestals. We say things like, “God chooses special parents for special children,” and “God won’t give you more than you can handle.” In a strange way, such platitudes 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.” We call kids with disabilities “angels.” (Leah is many wonderful things, but an angel she is not. And neither am I.) We lap up evening news segments on people with disabilities who have done extraordinary things.
When I was a kid, I didn’t want to be extraordinary. I wanted to be ordinary—to not have to dodge rudely gaping children who couldn’t peel their eyes away from my wheelchair and casts, to go to gym class, to have a boy ask me to the prom. One 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 been broken often. I am a human being, not a superhero.OI is an example of the world’s brokenness. I have come to believe that illness, disability, and disease are neither fundamentally good things disguised as bad (thus not the intentional work of a loving God who works in mysterious ways) nor value-neutral manifestations of human diversity. Illness, disability, and disease are, quite simply, the result of life in a world that does not work as God intended.
In responding to the devastating Asian tsunami on December 26, 2004, Eastern Orthodox theologian David B. Hart argued against any attempt to rationalize, ascribe meaning to, or trumpet God’s intent in human suffering: “Ours is, after all, a religion of salvation; our faith is in a God who has come to rescue His creation from the absurdity of sin and the emptiness of death, and so we are permitted to hate these things with a perfect hatred.”
I believe it’s permissible for me to hate OI with that perfect hatred for the things of this world that are broken, fallen, not of God. God designed bones to shore us up and protect our tender bodies from all that would assault them. Bones are not supposed to crack under the weight of a laptop computer. They are not supposed to snap when a little girl is simply dancing in her living room. A routine fall from a scooter should not land a child in the emergency room with multiple fractures. Forty-something-year-old knees should not be completely stripped of their cartilage. No matter how much good (wisdom, love, understanding, compassion) comes out of living with this capricious disorder, the disorder itself is not good.
How I perceive OI does not apply to everyone’s experience of disability. There is no overarching “disability.” There are only specific disabilities, experienced by unique people, affecting body, intellect, emotions, or relationships; severe, mild, and in between; affecting children and adults; rooted in genetics or injury or illness.
In No Easy Choice, I pushed back against the tendency for people to believe that physical disabilities like mine are somehow easier to contemplate than disabilities that affect cognition, intellect, learning, emotions, and/or social interactions. People argue that disabilities like OI “only” affect the body, whereas conditions affecting the brain are somehow more tied up with personality, with people’s “true selves.” Nonsense. My OI is not merely physical. It is a core part of my identity.
In an e-mail to me recently, friend and colleague Amy Julia Becker, who writes extensively about her daughter Penny’s life with Down syndrome, said this after reading No Easy Choice a second time through:
I’m wondering again about that question of the way that disability shapes and forms a person…I agree with you…that disability in any form cannot be taken away from who the person has become and is becoming. And yet, as you know, I am very hesitant to say that Penny would be Penny without Down syndrome, whereas I find myself able to imagine say, you without OI…I…have a sense, perhaps even a conviction, that there is something intrinsically and categorically GOOD about having Down syndrome. I recognize many things about DS that are not good–in Penny’s case they range from innocuous issues like flat feet and small ears to more serious problems like impulsivity, and of course for others they also run the gamut that can include childhood leukemia and really severe heart defects. But I still sense something good in DS itself, whereas I think you would say that there is nothing good, intrinsically, about OI. Of course God can bring good from it, and of course God has. But in and of itself, it is not good. Is this how you would describe it? Do you think this is a meaningful difference?
Yes, I do.
Do I hate OI?
Yes, I do.
Do I hate my life?
No. I love my life. And I will probably spend the rest of that life trying to sort out all of the tensions, paradoxes, and complications of living with this condition that I hate, that has nonetheless been an intrinsic part of the experiences that ultimately add up to a full, satisfying, happy life.