This week I learned that the first genetically modified children were born. Chinese scientist He Jiankui made the announcement on a video that the “gene surgery” he performed on two embryos resulted in twin newborns who are immune to HIV.
As this announcement washes over the news cycle my thoughts turn to my friends with disabilities with whom I shared life in L’Arche Portland, OR. L’Arche is an intentional community rooted in Jesus’ beatitudes, homes that that offer a place for people across the spectrum of disabilities to discover and share the gifts of eating, mourning, celebrating, laughing, and worshipping together. L’Arche began as a movement in France in the 1960s. Our ecumenical communities now spread across the globe from Bethlehem in the West Bank to Belfast in Northern Ireland.
Erin, Ben, Marilyn, and Joni were my housemates in L’Arche, “core members” as we call them because they form the center of common life in our home. They have called me out of life of perfection and busyness, from getting ahead and climbing the corporate ladder into slowness, stillness, and into peace.
This week I let myself imagine a world without them, just as they are.
I won’t paint a utopian picture of the lives of people with intellectual or developmental disabilities. I have no doubt that many of my friends who live with profound disabilities, were they given the choice, would desire to bathe and feed themselves, to communicate in a way that is accessible to peers, to participate in meaningful work, to attend college, and fit more easily into the world around them. If there was a way to remove Fragile X of spina bifida from the world, it’s difficult to imagine passing up the chance. I want to stop the suffering that results, for the people effected and their loved ones.
At the same time, I am worried about the idea of genetically editing the intellectual and developmental disabilities from the people in my life. While some disabilities effect people’s health and well-being, disability advocates want us to remember that often it is the environment that is disabling. We’ve formed a society where the expectation is that communication happens in one dominant way, that everyone should be able to physically access space in a common form, that we should live ruggedly independent. Everyone who does not adhere is forced into the shadows.
I also know that disabled persons will always be among us. Disabling conditions are not only genetic. They occur throughout life, because of accident and disease. Eventually all of us who have the opportunity to live into our eighties and nineties will become disabled by age. Eliminating disability from genetic codes does not make a world without disability. But it might move the needle in a troubling direction.
With today’s announcement of genetically modified babies we are within one generation of children designed for excellence. And there is no doubt that this technology will be available to one class of people – the rich. The yawning gap between the economically vulnerable and the generationally wealthy will roar to a chasm as children of the rich are modified to be smarter, stronger, faster, and more beautiful.
In the midst of this social engineering relationships in L’Arche communities will continue to deepen. I look at this genetically modified future and I am renewed in my commitment to create homes for people with and without intellectual/developmental disabilities who share the rhythms of daily life and discover unexpected friendships there. I will dig deep into a community that is a sign of hope that the world might bend itself not towards the elimination of the disabled but towards the recognition that each of us bear within us a gift if only we will take the time to see it.
