Thursday, January 24, 2013

A queer pro-choicer's story of welcoming her Down Syndrome child

I'm publishing this so that pregnant moms with Down Syndrome can be inspired to keep their child.


The early stages of pregnancy were fairly typical. As Adrienne’s body was transforming, I continued my work in youth development and organizing. During this time I became close to a group of young activists who all had disabilities and worked together through a group called Kids as Self Advocates (KASA). They opened my eyes to a new community, perspective, and questions about choice.

The KASA youth were all individually powerful, bright spirits. Getting to know them opened my eyes and heart to think about how medical practice, the deep cultural value of "individual choice," and our fears lead many of us to abort babies with disabilities. Through abortion we edit our society—and experience—of humanity. I began to question why we choose to keep some babies and abort others, and I considered what I would do if my child had a disability.

Adrienne and I went to the required class for prospective parents of children with genetic disorders and procedures to terminate pregnancies. As a queer person, I was disturbed by how many disorders highlighted in the class simply altered the sex of the child. I had a sinking feeling that this medical and cultural practice was also about editing out intersex babies from our population. I thought about sex selection practices around the world. The parallels made my head spin.


We left that weekend having made the choice to have Jonah. The power of making this choice is that we knew, our community knew, and the medical team knew that we were welcoming him into our life. This made all the difference. I could see it the moment he was born and the entire team—midwife, nurses, doula, even the doctors—were jubilant. You can see it in the photos. There was no doubt, no hesitation, no fear or grief present in the room.

This is not true for many families who give birth to babies with obvious disabilities. Often a sense of mourning, shame, anger, and guilt sweeps over the room instead of joy. But this is not the baby’s problem, or the mother’s or the families’. It’s ours.

After he was born we struggled to find community. Many of the parents who choose to have kids with Down syndrome and genetic disabilities are devout Christians. Other communities secretly (or not so secretly) cannot understand why you would "choose" to have a child with Down syndrome. The magic for us has been trying to find people who will be courageous enough to walk a different path with us.

I wonder what proportion of intersexed babies are aborted.

Could be the subject of a future motion condemning the practice. Just a thought.