Today is World Down Syndrome Day. It is a beautiful day to work towards greater inclusion of Trisomy-21 in rich, global life, as well as to celebrate diversity and differences among people more generally. As Trisomy-21 is the de-facto poster child of all developmental disability, a day like this can leverage a great deal of attention and funding to build a better world for congenital differences. This is necessary. It’s good. It’s RIGHT. So please do turn towards celebrating Down Syndrome today in whatever way calls to you.
The organizers of today’s festivities offer a prompt. Fill in the blank: Inclusion means…
I come at this with such a strange mix of intimacy and outsider-ness. Day in and day out, I hold families who chose not to raise babies with disabilities. We eliminated all happy celebrations for our children’s inclusion in life. We miss this very, very sorely. AND, we are the keepers of the memory for a whole lot of babies with that never quite were. Today I’m trying to imagine inclusion for babies lost along the way and inclusion for parents who are grieving and missing their babies with T21. Not all such families desire to be included but some would love nothing more than to show up on World Down Syndrome Day in memory of their baby and support the children who are here living it.
Media loves to make enemies where there aren’t any. I read a big long cover story in The Atlantic. In it, all these moms and their kids and teens with T21 talk about their lives. It’s beautiful, every single family moment is beautiful. But then the reporter takes the gaze off her subjects to construct a looming enemy of women who choose abortion — or even opt for prenatal testing. She thinks we’re out for genocide. She paints us as risk-averse (true) and paints risk-aversion as profound moral failure (false). None of her subjects go there. It’s all the reporter. Andrew Solomon does it too, diverting his focus from families with differences to take Nazi-flavored digs at women who choose abortion after prenatal diagnosis. Then he closes out his story on this tiny moment of worry at his baby’s birth. After writing his book, he “knows” that it’ll all be OK even if his baby is disabled. The “happy ending” is that the baby is, actually, “OK.” What!? It’s a maddening, divisive ploy to mark himself in contrast to parents like me without ever having to live any diagnosis for real. But this is how we have these conversations. Through this us vs. them frame, I am worse than an outsider, I’m The Bad-Guy. What rubbish. I strive for a more inclusve world, and in a more inclusive world, there’s only ever us vs. us.
Inclusion is honoring that all human beings have needs, and all of our needs are worthy. This brings family into the fold. There is no child in a vacuum. There is the child in relation to the parents. The parents in relation to each other. Each family member and their relationship to health, both emotional and physical. There is only the child, a mere mortal, in relation to other mere mortals. Not all families can meet the needs of all children, but limitation on resources doesn’t ever have to mean a limit on love.
A great many families who receive a diagnosis of T21 choose to end the pregnancy. The statistics vary from place to place, and the numbers don’t matter to me, because NO ONE makes this decision for the sake of those numbers. We decide for our own specific family. We do the best we can for our own values and personal circumstances. What DOES matter is that it’s ok and normal to carry a pregnancy and raise a child with T21, and it’s ok and normal to decide to end a pregnancy after a diagnosis of T21. Inclusion is honoring the wisdom of different paths forward for the same diagnosis.
Parents make this choice to end the pregnancy for many reasons, some of them cultural. In all the ways that the world fails to support children with Down Syndrome, or ceases to support them when they grow into adulthood, parents understand that THEY TOO will be let down. Each and every gap in our societal support system becomes more pressure on the family. Inclusion is supporting families as well as individuals with Down Syndrome.
Sometimes, the reason for terminating a T21 pregnancy is that the family is ALREADY supporting a child or adult who has T21. I do not ever offer direct quotes from my support group, but a message like this one is something I sometimes see: “Raising my first daughter with T21 [or other disability] was so obvious it didn’t even feel like a choice, but two? I just can’t. I know what it takes and while I’m grateful every day for the daughter I have, it’s more than I can do to do this twice at the same time.” Inclusion means acknowledging that those who terminate pregnancies for T21 and those who carry pregnancies for T21 are sometimes the exact same people.
There’s a lot of fear among parents processing a disability diagnosis, and I have to speak for myself on this one because it is too delicate for generalization. Sometimes I too-quickly default to “look how badly she could have suffered!” It’s comfortable to talk about what I do for my children, and uncomfortable to examine what I do for myself. The longer I process and integrate my own loss, the more I can admit: I have no idea how happy or miserable Laurel would have been. She might have been totally satisfied with her lot in life. But caring for her felt like too much for me. I was unwilling to give of myself in the way I knew she deserved. This is NOT the same as insufficient love. The truth is: I didn’t know, beforehand, if I could love a child with disability as much as my healthy children – until I did. I just did. Laurel was disabled and I just loved her. The problem isn’t ever insufficient love. Love is grief and grief is love. They are two sides of one coin. Inclusion is letting all feelings belong (yearning, fear, love, grief, relief, shame) without forcing any contradiction.
I don’t know when the rest of the world will catch up, but today, March 21, I celebrate those living with T21. My classmates. My family friends. My neighbors. My support moms and dads. Today, you belong whether you are someone with T21, love someone with T21, or might have been someone with T21. Inclusion is love and belonging.
