Up to ninety percent of babies–ninety!–diagnosed with Down syndrome in pre-natal testing never see the light of birth. (Ditto other genetic conditions such as dwarfism.) Every once in a while, in the face of this carnage, a loving parent of a Down child takes to the media to defend their child’s worth and to share the challenges and joys that come with raising their son or daughter with special needs.
The Atlantic, publishes the latest such article, in which college educator Theo Malekin writes to laud the spectacular medial care and supportive services his daughter Hazel has received, and to tell others that children with Down have lives worth living–and parenting. From, “A Generational Shift in Understanding Life With Down Syndrome:”
I cannot think of any parents of a child with Down syndrome who would give them up for anything. Love has a way of making statistics irrelevant, and it brings its own kind of knowing. I do not love my daughter any less because she has Down syndrome. Her diagnosis says very little about who she is. She is not a disease or a syndrome but an individual: affectionate, naughty, infuriating at times, stubborn, self-willed and utterly charming. Certainly she has medical problems and developmental challenges not faced by other children. I’m not saying those don’t exist. But they’re one part of a much bigger picture…
You cannot know if someone else’s life is worth living without asking them and without even knowing them. A disability does not necessarily stop you living a full, satisfying life. Oddly enough, I’m not sure that disabilities have anything to do with living full satisfying lives. When it comes to Hazel, her life is not a burden to her family but an unending source of delight. For my part, I cannot imagine life without her. But most importantly, her life is valuable to herself, and definitely worth living.
That’s great, but predictably inadequate: Whether because of belief, desire not to judge, or simply not wanting to get into a sticky wicket, Malekin doesn’t bring the logical thrust of his argument all the way home:
This is not intended as an argument against abortion. It is an argument for giving prospective parents of children with Down syndrome a full picture of what their life will be like.
But it should be an argument against eugenic abortion! We have no hesitation telling people in other contexts that certain legal behaviors are wrong. We do it all the time: We tell people not to smoke, not to get fat, not to own guns, not to generate greenhouse gasses. Surely, we can tell people they really shouldn’t abort babies because they have Down syndrome.
If a happy father of a Down daughter won’t make that important argument, who will? So I applaud Malekin for speaking out about the value of people with Down and for deeply loving his Hazel. But more is needed–a robust, unapologetic, and rousing call to, “Let these live!”