I see the speculations and I hear the questions all the time. Do children get autism from the environment? Is Lucia the way she is because of something I ate during pregnancy? What is it that causes your child to be different? These questions all hinge on the belief that maybe there was a way to prevent these diseases and disorders and syndromes. And if we just knew more or were a bit more vigilant or worked harder, maybe we wouldn’t be left with autism or ALS or AGS (the genetic syndrome that makes my daughter different). I probably shouldn’t touch these discussions with a ten foot pole. They’re weighty and emotional and fraught; they’re not easy.
But all I know (and I want you to know) is, I don’t feel like I’ve been left with a syndrome–I’ve been gifted a child.
And the world is so full of blame and blame-shifting already. In fact, one of my students wrote a pretty wise paper this semester in which she claimed that most theories of disability are actually so intent on shifting blame (from societies to individuals to the environment, etc.) that they fail to take account of the people in front of them.
I’m somewhat ashamed to admit there was some relief in learning that Lucia’s diagnosis was genetic. There was practically nothing we could have done, short of not giving birth to her, to prevent the manifestation of AGS in her being. There, I thought, now no one could look around and blame me for her disability. I neglected, however, to realize that the revelation of a genetic cause for AGS could make the search for a cure just that much more fervent and earnest. I neglected to realize that control is yet another human propensity and curing a wildly passionate end.
As much as we human beings are driven toward science and explanations, we’re also driven toward progress, perfection, and efficiency. And although those values may get us to an eventual cure or eradication of diseases like AGS, they won’t help you or I love or learn from Lucia; they likely won’t help us further understand our shared connection and humanity. You see, I’m not against science, not in the least, but as a social scientist, I heartily object to ideologies that dismiss difference, simplify humanity, and make progress an idol for the privileged. I notice that as human beings we struggle so fitfully to hold in tension our acceptance of one another’s differences and our desire to change the world and others in it.
Several months ago I sat with a dear friend of mine who has a child with autism and she asked a striking, heartfelt question. “Do you think,” she asked respectfully and therefore, trepidatiously, “that there’s some sort of freedom in the way that you all have been able to release Lucia from all of the developmental milestones and standards because of the severity of her disability?”
“Oh absolutely,” I replied. I went onto talk about how instructive this shift has been for my husband and I, enabling us to emphatically celebrate and truly love Lucia for who she is, not for what she does. And my friend went onto tearfully describe how crippling the pressure of fighting for her child’s every opportunity, providing for her child’s therapies, and keeping up with all the internal and external expectations had become for she and her husband. And her tears broke my heart.
“But wait a minute,” I stammered, also trepidatiously because her experience is not mine and mine not hers. “If the worst case scenario comes true–if your daughter struggles beyond belief in school and therapies ‘fail’ and she ends up dependent on you and then her sister or your family long after you’re gone, I imagine you will always feel as if you hadn’t done enough, right?” She nodded and I felt a little horrible for even forcing her to face her worst fears.
“But if she goes onto to defy all expectations, to succeed in school, to become independent, go to college, marry, all the typical things? I doubt you would credit yourselves, right? Surely you would chock all those things up to luck or providence.” And when she nodded, I’m afraid I may have very in-elegenatly replied something like,
“Well, that’s f***ed up.”
I didn’t mean it in the sense that my friend’s attitude toward herself or her child is so remiss and corrupt but just that the feeling that kids with disabilities need to be like everybody else to be successful and that their parents are so complicit in that makes the burden pretty impossible to bear. And when we ask, even innocently where children with disabilities come from and who is to blame for their existence, we often paint them as something other than human, some aberration from humanity. But people with disabilities will always be with us, and they are part of a shared humanity, reminding all of us and teaching us just what it means to be human no matter how much we fight that truth.
Today my husband and I rest in the present and embrace who Lucia is. While others fight aggressively for a cure for Lucia and others with her syndrome, we know that is not our battle; in fact, we reject the metaphor of a battle altogether, because we can’t help but notice that what the world wants and needs and strives for often seem the very opposite of all Lucia has taught us and has to give. Perhaps they’re not antithetical to some–this penchant for curing and this embrace of life in all its diversity–but I can’t help but think that when our understanding of disability tends toward a shifting of blame, we’ve audaciously and ironically wrested control away from the very people who might be able to teach us something about it. I can’t help but think that in my three humble years of mothering Lucia, I haven’t found her so much in need of changing as I’ve found myself in need of a different, better way of experiencing the world. I can’t help but think that however Lucia and your child and my friend’s child got to this earth, I’m so glad that they’re here.
And that if I’m to blame (which I most certainly am in part)–well frankly, I’m humbled and thankful and forever the better for it.