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I had a great weekend accompanying my friend Joni to the l’Arche at Western Regional Gathering. Each year we have a get together/celebration of all the l’Arche communities in the West (CA, WA, OR). We met in Tacoma this year and had a very special guest. Each year Jean Vanier, l’Arche’s 80 year old founder joins a region for their gathering and this was our year.
This was a very special event because this is the last time Jean will be visiting a Regional Gathering. He’s ready to return to his home community in Trosly, France. He spoke poignantly about growing old and the need to spend time being present to his aging body, to give care to others and finally to receive care from others before he dies.
There were a couple things that surprised me about his conversations with us. He spoke very passionately about his need for Jesus, the sacraments, times of prayer and meditation. L’Arche (at least in the US – especially in the NW) has tended towards what I call a “lowest common denominator spirituality.” While l’Arche grew out of the Catholic church and the experience of being drawn to the crucified, disabled God, more and more our communities are called to welcome men and women from a variety of faith traditions. This has not been don
e well and more and more of my friends who join l’Arche are astonished by the secular humanism that is now the rule of our community life.
In other words, instead of finding creative ways to honor our diversity while standing near to the heart of the God of Israel who called forth l’Arche, the attempt of our community in Portland has been to try and see what we all have in common and to smooth over any potential controversy with tolerance. It’s nasty political liberalism, basically what a community for the disabled would look like if founded by John Rawls. Damn the doctrinarians.
Somehow I was under the impression that this was where Vanier stood on religious diversity. I was wrong. It was pretty clear that he was struggling through this issue and when we talked he directed me to some unpronounceable French theologians who have written on this topic. (Shocking fact 2: French theologians are writing about l’Arche.) But his own deep sense of religious conviction, his rootedness in Catholicism and his very specific call to be near Jesus were all wonderful revelations.
The other surprise was how often he spoke about the impending crisis the disabled in our communities will face in light of the new eugenics. Based on what I’ve heard, most people in my community are pro-choice, pro-eugenics, pro-euthanasia political liberals. Jean spoke about the consistency of our commitment to care for the weak – the unborn, the soon dead, the critically injured, the genetically compromised. I never hear anyone in l’Arche talk about the larger witness of our life to producers of knowledge. That’s because we have lived mostly cloistered from these issues.
I was very encouraged by meeting Jean and experiencing his unbelievable gentleness. Seeing him interact with our friends was the closest I’ve come to being able to understand God’s preferential option for the poor. Jean lavished his love on our weakest, our most profoundly needy. It was a beautiful thing to see, not only from Jean but from all the assistants. To see 200 people, half with disabilities and the other half finding joy and promise in them – it was the kingdom, my friends.
This past week I started to read the new book of essays edited by Brian Brock and John Swinton called Theology, Disability and the New Genetics. It’s a great volume with a wide variety of perspectives on the theology of disability. The authors are a man with a disability, a theologian whose son has Down Syndrome, a pastoral counselor, a special counsel to the Dutch embassy and several doctors. And Amy Laura Hall. Of course.
One of the most interesting chapters was called Aren’t We all Eugenicists Anyway? written by Mary Mahowald who is emerita professor of obstetrics at U of Chi. Her essay is about the different ways we attempt to control and channel our children and whether every instance of eugenics is bad. We all know bad eugenics – when Nazi’s attempted to create a perfect race by eradicating those they considered “less desirable,” the Jews. But eugenics, which simply means “good generation” happens all the time in much more socially accepted ways. The abortion of the disabled is one very obvious way eugenics is exhibited in our country. And with the rate of babies aborted with Down Syndrome at 90%, I would say very acceptable.
But what about prenatal vitamins, avoidance of certain foods and alcohol? These things are done so that we will have a “healthy child” instead of a “child with a disability” such as Fetal Alcohol Syndrome, mercury poisoning or spina bifida. We make judgments about the kind of children we want by avoiding these outcomes. Then there are the ways we aim for positive outcomes. Baby Einstein “in the womb” educational tapes are all over the place. You can even attempt early language skills in utero. My eugenics happens with fish oil. I started taking 4 g of fish oil a day after reading a study about the developmental benefits on baby brains discovered by Australian scientists. Hand-eye coordination improved, instances of ADD/ADHD were lower and early vocabulary increased.
I take fish oil (and plan to breastfeed for at least a year) because I think it will help our baby be smart and able to hit a T-ball with above-average accuracy. I am making my desire for this particular type of child known through my supplements. At the same time I would not be disappointed with a child who did have ADD or spina bifida. I also think there is something disturbing about trying to teach your child French cognates in the womb.
I am somewhat of an ethical contradiction on this matter and I’m hoping this book will help me to sort out some of the complications around these choices and help us to answer the question why do we choose as we do?
What does it mean to want a child without a particular struggle? God has put many people in our lives with Down Syndrome, FAS and CP that have wonderful, flourishing lives. We don’t doubt that while there would be difficulties for us in having a child with a disability (as if there were not with all children) that there would also be great joy and wonder. But do our actions speak something else? Are we betraying our unwillingness (subconscious perhaps) to welcome a child with a disability? Or is there something “irresponsible” about not doing your best to promote fetal health and to give your child the best opportunities? Is not taking these steps inviting unnecessary suffering on a child? And what constitutes “health” and “suffering,” necessary or otherwise?
Ultimately I wonder, how can we love and accept our disabled brothers and sisters without reservation while at the same time wishing they were not as they are by avoiding bringing others like them into the world?
I don’t have any firm answers to any of these questions. Maybe the answer is that you do your best (within reason) to prepare your child to be developmentally competent in the world. At the same time, you prepare yourself to welcome whatever gift the Lord presents.
“Within reason?” “Developmentally competent?” Doesn’t this sound wrong and strange to anyone else? If you have insight, do send it my way. Sometime soon I’ll share about the chapter by Hans Reinder which I just started. He will probably have something helpful to say. And I have a theology crush on him.
Last night I looked in the mirror and thought, “whoa! Where did that belly come from!?”
Looks like Baby Flo-Bix is starting to flesh out a bit. We’re up to a fetus the size of an apple floating around in there. I still cannot get over the strangeness of carrying around a four inch creature wherever I go. Most of the time I’m not even thinking about it and even when I do it still seems impossible. All the evidence of these things unseen has been external (ultrasound, Doppler). I think when this babe actually starts kicking around and I come to realize there’s actually something in there, I will be blown away.
One of the conversation any pregnant woman runs into time and again with her physician/midwife is around genetic testing. At our very first, 8-week appointment the doc sat us down and laid out at all the options we would have for testing over the next few months. As first time parents we listened intently and tried to think about what was best for our family. My thinking was, if we do have a fragile baby then maybe that means I will have to carry it differently or go on bed rest. Maybe she’s asking us this because the baby will need immediate surgery or I’ll need need to make dietary changes.
If you’ve been here before I’m sure you are shaking your head at our naivety. When I asked the doctor those questions she looked at me a bit in awe. “Um, no, well you wouldn’t do anything different.” “Then why would we want to get tested?” “You would, hmm, uh, need to decide if you want to….continue the pregnancy.”
Whoa. This woman who brings babies into the world for a living just asked if we would want to terminate my pregnancy because our child would be born with a sickness or disability. Once we assured her that we had no intention of ending the pregnancy regardless of outcome she told us genetic testing wasn’t something we needed to pursue. This conversation has been repeated at every other prenatal appointment (we switched to a midwife in SW WA) and hospital sponsored class we have been to.
What’s incredible is the moral neutrality presented in the option. When the care provider frames it as “information that you will need to decide how to act upon,” there is no expectation that you could make a wrong decision. Whether something as simple as a physical deformity like cleft palate or a life-threatening genetic disorder like trisomy 13, you can do what you want. I continue to be baffled by the idea that people inculturated to expect perfection and independence as their inalienable right would be morally qualified to make a decision about a child who will put these rights into question with every moment of her life.
One of the suggestions for early screening and diagnosis, an argument put out by Commonweal after the introduction of a 1st trimester DS screen three years ago, is that these tests help parents change their expectations about their birth and prepare them early for the new challenges of caring for an infant with a disability. I wonder, shouldn’t that always be our expectation? Should we ever go into a pregnancy “hoping for the best” as if “the best” meant the type of baby the world conditioned us to believe was our right?
To be fair, I would be truly devastated by a condition which caused suffering for our child, particularly something like trisomy 18 or cystic fibrosis. But our reaction to a Down Syndrome baby would be completely different. These friends we have with DS are wonderfully flawed and gifted individuals, just like any person. But this gets back to the central question: are we expecting in the way we should be expecting?
It will take a lot of grace and prayer for us to be ready to welcome a child with a fatal disorder like trisomy 18 and I pray every day that we won’t have to say goodbye to our baby within hours or days of its birth. At the same time, I don’t find myself asking God to protect us against a child with spina bifida, MS or Downs. It just feels morally wrong for people who were nurtured and discipled in L’Arche to pray in that way.
In my less faithful moments I am scared out of my mind about the hospital costs associated with a fragile child. I grieve to imagine the deep prejudice our child will face in a world that would have aborted him. But I also believe there is more grace in us than I know and that we have been prepared by L’Arche, our church and our family to say “yes” to whatever gift we are given.
So, should Christians be screening in pregnancy?
Today Jacob and I finished our final membership class at Portland Mennonite Church. It took us a long time to start the process. Since we never know how long we are going to be in the Northwest, becoming a member and the next month skipping town hasn’t made much sense.
J’s perspective on the matter finally swayed me – we just need to make it official. We’ve been going to this church for two and a half years. We serve on committees, are part of a small group, heck I was even asked if I would consider being nominated as an elder. Membership for us means formalizing our relationship with this particular church community in a way that we can contribute even more to the life of the body.
Part of our preparation has been reading the Mennonite Confession of Faith. The baptism article is the only one that I’ve found particularly challenging. Having grown up in the Episcopal Church, there’s a lot to “get over” in coming to the Anabaptists. While not always agreeing, I’ve been able to adapt to 7-times-a-year Communion, the lack of emphasis on Old Testament scripture and the fear of ritual I sense in many parishioners. Baptism is a little different for me simply because the theology of pado-baptism makes so much theological sense, especially for theology of disability.
I certainly understand why the early Anabaptists abandoned pado-baptism. But today those reasons don’t seem as relevant. At greatest stake for me is what adult baptism says about our ability to acknowledge the weight of the cross. Infant baptism, for those in reformed traditions is baptism into the Trinity, death with Christ and the beginning of life in the church. When these churches baptize infants it is the child’s parents and the community of believers who take on the weight of responsibility. infant baptism says, “this child is going to die and if you don’t do something about it, they are going to die eternally.”
In the Mennonite church baptism means something very different:
Christian baptism is for those who confess their sins, repent, accept Jesus Christ as Savior and Lord, and commit themselves to follow Christ in obedience as members of his body, both giving and receiving care and counsel in the church. Baptism is for those who are of the age of accountability and who freely request baptism on the basis of their response to Jesus Christ in faith.
The reason we don’t baptize infants is because they cannot “freely request” “on the basis of their response.” Neither can children truly comprehend something else required in the confession: “Those who accept water baptism commit themselves to follow Jesus in giving their lives for others, in loving their enemies, and in renouncing violence, even when it means their own suffering or death.”
You know who else can’t do these things? The disabled.
Some kind people in the membership class tried to help by saying that, because baptism isn’t efficacious and instead just a sign, it didn’t really matter if you were baptized. I don’t think this is true. Baptism is initiation into the life of the church universal, the body of Christ. Whenever I see someone with a mental illness, a profound disability or a child baptized this is an awesome reminder of how foolish we are to think we can make a confession of faith. Just like the first disciples we can’t even imagine what it would mean to carry the cross and, in the moment of truth, like Peter most of us would run.
But that’s why we aren’t left alone. The community of believers is what strengthens us, trains us and prepares us for a lifetime in the church. In many ways, baptism is the first expression of our dependence on one another and the Holy Spirit for our redemption and for bringing that redemption back into the world. It is the moment when we experience our most profound disability. We don’t know what we are getting into and we are dependent on God and others for every breath of faithfulness.
I’m not sure where to put all this. I’d like to think some wise Mennonite theologian has a great answer to this very serious theological issue. Isaac? Any thoughts? Anyone else care to chime in?
