The NYTimes parenting blog recently featured a post about research towards mitigating the effects of Down Syndrome and the responses of parents grappling with the idea. A lot of the press around the Stanford University research has called the new interventions a cure. To be more precise, what they are talking about are drugs to help information retention in children (babies) with DS; they are not talking about adding an extra chromosome to a fetus:
Children with Down syndrome do not start life developmentally delayed but rather fall behind as they get older. By using mice that were genetically engineered to mimic Down syndrome, they found that neural memory deficits prevent such children from collecting learned experiences, and that they could improve memory and cognition by medically boosting norepinephrine signaling in the brain.
The response posted on the blog comes from the mother of twin boys with Down Syndrome. I found it fascinating because the mother takes the very standard disability-rights stance, something usually associated with communities and individuals who have physical differences like deafness or who are missing limbs. The disability-rights approach finds its roots in identity politics and assumes the position that it is society, not the disabled body, that creates disability. Therefore, disability advocacy should be aimed towards liberating society to see their response to disability as flawed.
While this has been the line towed for decades by the disability-rights movement, traditionally body politics has had absolutely nothing to say to intellectual disabilities because these are the kind of impairments that often times (though not all the time) limit the ability of an individual to make choices. Body politics is built on the foundation of liberal citizenship, that ultimately our freedom is linked to access: access to the democratic process, to making churches and theology open to disabled and to destygmatizing disability in the public square. It is a movement from within, a movement that people like me, “the temporarily able bodied,” must participate in as observers lest we do violence to the self-representation of those whom we would otherize by speaking for their experience rather than letting their experience of the disabled body speak for itself. You can imagine how this falls apart when we’re talking about a community of people who cannot even provide physical care for themselves, let alone organize inclusion protests. Body politics isolates the intellectually disabled precisely because it depends on the rational will.
And that’s why this is so fascinating. The parent responding in the blog sees a window for participation in the disability-rights movement, a way to reclaim her child’s identity by speaking out against the pervasive theory of normalization. She rightly wants to challenge societies stranglehold on the idea that competency and independence are what ultimately make us human. She rightly wants the world to accept her child for who he is.
Hans Reinders’s Receiving the Gift of Friendship does an incredible job and looking at where this reaction falls short, however correct its sentiment may be. Access to the public square, Reinders says, is not the “hyper good,” as we are sometimes led to believe. We are creatures made for friendship, in particular earthly friendships that mirror friendship with God. That the intellectually disabled have a difficult time making and keeping friends is a true source of impoverishment that will not be mitigated by any amount of norepinephrine treatments:
It is precisely because the profoundly disabled contradict the innermost core our own being – “the reflective self” – that their presence is crucial to a Trinitarian account of who God is and what God does, and consequently who we are and what we should do. If anything important is to be learned from being with the profoundly disabled person, it is precisely to learn how to be human, theologically speaking, without relying on the reflective self as our inner core. As human beings, our vocation is friendship with God, but usually our reflective self gets in in the way of trusting God. Being with an intellectually disabled person teaches us that we can only give friendship after we have learned to receive it.
Reinders tries to help us avoid the temptation to make the lives of disabled intelligible on our terms (e.g., the blogging mama who writes, “Their intellectual ‘impairment’ gives them an insight and an emotional intelligence and maturity that I can only aspire to.”). Not only do we not have to give a reason or an explanation for the particular flourishing or lack of flourishing of a child born severely disabled, we should be willing to confess our ignorance, knowing that this will have no affect on how we respond. “To overcome the need for justifying reasons,” he writes, “we need habits and skills rather than arguments. This is why the task of learning how to be friends with the intellectually disabled is particularly crucial.”
There is a little girl in my life with Down Syndrome and every day I pray that she will make friends. She is one of the rare few born to the kind of parents who see her as a gift, have found access to the medical treatment she needs and can provide for her food and shelter. She has siblings who I expect will care for her when Lisa and Bob can no longer. There is little else I can want for her than deep and abiding friendships. My experience in l’Arche tells me that this will be one of the more challenging aspects of her life. Her mama will fight for everything else, but she can’t fight for that. While my distance makes it difficult for me to cultivate a friendship with Magdalena, I’m hopeful that I can continue grow in friendship with other people with intellectual disabilities, knowing that they cannot choose my friendship, only receive it. I pray daily and live in the hope that Mags will help others know the friendship of God through knowing her as a friend.
This isn’t to say that there won’t be times for parents to rally, laws to be passed and, please God, health care legislation to go forth that won’t prevent Magdalena from receiving care because on her condition. What gets more to the root of what will make her life flourish are people who will simply love her and be with her along the way. An earlier post of the Motherlode blog gives us a hint at life where habits of friendship trump arguments about access. Welcome, baby Cash. May friendship find you.
“You’ve probably already heard, but we suspect your son has Down syndrome.” We hadn’t heard. We are devastated. We are reeling. Hadn’t we been through enough already? Tests are done, literature distributed, doctors talk to us in a language we don’t (or don’t want to) understand. Finally, it’s is confirmed. We are still trying to catch our breath.
Then the blessings come. Can they be explained any other way? The phone call on Sunday to the on-call pediatrician who when Britt said, “We just learned our son has Downs,” answered “My brother has Downs; that’s why I got into medicine to begin with.” Then a Wednesday trip to the ob-gyn where our doctor’s next patient just happened to have a child with Downs and would be happy to talk to us if we thought it was helpful. A call from my sister in Ireland who just had a lovely visit with her husband’s cousin and her daughter who has Downs. All signs that we are not alone in this.
Our son came home from the hospital Christmas Eve. As his brother says, he clearly wanted to join us all in time for Christmas. He is beautiful and loved, and although we know this journey will not be an easy one, we are so grateful for this very special gift we have received.