“No parent wants their child to be different,” she said passionately yet nonchalantly, looking innocently into the camera in this week’s premiere episode of a new season of the reality tv show, Little People, Big World. She was talking about the possibility that their baby would be born with dwarfism, while meanwhile her husband, a little person, shifted uncomfortably in his chair, trying to parse the divide, forgive her somehow for saying that his very difference, one she presumably accepted and loved, was so naturally undesired, bad–something to be feared.
I don’t mean to pick on her specifically.
I think many of us bristle at the presentation of disease and disability as unwanted variations and aberrations in nature’s otherwise rather painstaking track record for miracles, successes, and beauty. But what if I told you there were all sorts of dormant mutations in your own genetic material? What if I told you that nature “makes mistakes” all the time and it’s just that some of these variations are visible while others are less so? What if I told you that Lucia, my own daughter, was the result of one of those presumed “mistakes,” so rare, so different, yet so deeply loved and wanted? Might that change your mindset that difference is always something to be naturally avoided or eschewed at all costs?
Underneath the reality tv star’s seemingly innocent words ran a subtle, yet deep vein of privilege and conceit. Anyone who cared would prevent difference if they could, she presumed. But different to whom, I wondered. Black kids are born into a pretty inhospitable world, but it’s not their blackness that’s a problem but the normative white culture that devalues their lives. Gay and transgender kids aren’t really all that different than any other kids and yet their difference is targeted as an assault on heteronormative culture that reproduces itself through fear and exclusion. As long as difference remains the much feared, undesirable cultural alternative to healthy and white and straight and male, we desecrate the true variety and value of human life that God has made because we play God ourselves–even if it is ever so subtly with our wishing away of certain babies like mine.
The day after legislation that devalues the life of people like my daughter, people who are poor, people who are sick, people who are women, people who are victims of rape, and people who are old passed through the House, I still have the audacity to dream differently. And I have my daughter to thank for that. I don’t want to live in a world that she is not in, because I would not know the fullness of what God has given and imagined for human beings.
And yet, this world, this country specifically, is becoming extremely inhospitable toward my daughter month by month. As a parent of a child with special needs, I want to live in a country that accepts and loves and cherishes children who are different– not with asterisks or snide comments or fearful glances or knowing pity or minimal health care or scant education–but full stop. Don’t tell me how expensive my child’s medical expenses are or how arduous her special education is, how different her needs are from a typical child, how wildly incompatible they are with this cutthroat ability-obssessed culture we live in, because I really do know. I know this isn’t easy because I’m living it alongside her.
But I made peace with Lucia’s challenges years ago; we’ve gone on living this incredibly full life and we’ve been buoyed by our church, friends, family, and the incredible array of services NJ Medicaid provides. Our family has found refuge in a state that truly values her life, but for how long? How long will you continue to live by the conceit or the privilege that your life is somehow any different from ours? How long will you fear rather than embrace difference, support legislation that carves us off from one another by our differences, asserts hierarchy in nature when you know not what mutation, future, or controversy may come–legislation that makes health the luxury and priority of the rich?
Control over the progression of my daughter’s disease is a true illusion, but the choice to value her life and give her every chance possible–that’s firmly in your hands and mine.
And God knows, I’m still so very grateful that my child was born different.
*If you want to learn more, read this piece on “5 Things to Watch as GOP Health Bill Moves to the Senate,” and if you want to act on behalf of families like ours and kids like mine, call your Senator and tell them our story!