Being interviewed for a documentary

Friday I was interviewed for a documentary.  This was a fun, spur-of-the-moment experience with two twenty-somethings who were told by a colleague of mine that I have some good stories to tell.  I think they initially arrived with thoughts about brain tumor conversations, but they left the topic entirely up to me, so I started off with the Two Shitty Hands story, a story which, to me, has become sort of iconic.  It tells me a lot about our cultural narratives and what we believe to be true.

The documentarians, Jess and Reuben, were game, asking me about Maybelle and cultural beliefs about Down syndrome, about Biffle's and my decision not to have an amniocentesis, about my politics around abortion given the high percentages of fetuses with Down syndrome who are aborted.  They wanted to know about feminism and disability studies, about reactions to my pro-choice politics, and about the brain tumor.  It was an interesting conversation, and they were warmly tolerant of the fact that I can talk for paragraphs at a time when given a topic I'm passionate about and an audience that is quiet and focused on me.

In general I was happy with what I had to say.  One answer in particular pleased me.  Jess asked if I'd heard of the couple with Down syndrome in Australia who were wanting to have children, and the public discourse surrounding this--worry, suggestions that they should be sterilized, that a life with cognitively disabled parents wouldn't be right for a child.  She wanted to know what I thought.

My answer emerged as a clear path in my own mind.  I knew exactly what I wanted to say, and I said it.  It was one of those answers where you think, "I wish I had this on tape!"  And then I got to think, "Wait--it IS on tape!  I'm being filmed for a documentary!"

I started off talking about how troubling it should be to all of us when societies decide who gets to procreate.  If sterilization is imposed on certain populations because we don't think they're quite human enough to deserve to reproduce, we might want to recognize that this was an idea appealing to late 19th-early 20th c. America, and consequently to the Germans in the 1930s.  Eugenics.  We should be very, very troubled by that ideology.

Then I took it in a different direction, sharing with them the fact that, in the year I was born--not that long ago--parents of babies with Down syndrome were routinely told by doctors that their child would never recognize his or her parents, would never talk or walk, not to mention read a book or ride a bike.  During the interview Maybelle was napping, so I couldn't say to Jess and Reuben as I say to you readers:  Look at Maybelle!

It was in the neighborhood of thirty years ago that doctors were telling people that a baby like this wasn't possible.  They weren't saying this because they were manipulative, evil bastards. They were saying it because they believed it to be true.  But it's clearly not true.  In a very short amount of time our whole perspective on Down syndrome has changed--because, as one author puts it, "in the early 1970s some parents did swim upstream against all they were told and brought their children home, worked with them, held them, provided them physical therapy and ‘special learning’ environments. These parents are saints and sages. They have, in the broadest sense of the phrase, uplifted the race. In the 10 million-year history of Down syndrome, they’ve allowed us to believe that we’re finally getting somewhere.”* Because these parents didn't believe the cultural myths and lies, they revealed them for what they were and made it possible for us to start creating communities that are better able to help all of us achieve our full humanity.

So I told Jess that if anybody ever says to me, "People with Down syndrome can't do X," or "Maybelle will never be able to X," I simply dismiss it.  We don't know what Maybelle will want to do or be able to do.  If, as an adult, she wants to partner with a person of her choosing and create a family, then I'll do everything I can to help that be possible for her.  I'll also help her to decide what college she wants to go to if that's her path, or I'll help her hit the road as a musician (like her dad) or a documentarian, if those are the passions that call her.  Maybelle's life disproves much of what the best and brightest in the medical field believed to be true about Down syndrome in the 1970s--and she's not even two yet.  Our cultural understanding of Down syndrome--and disability in general--has been so terribly skewed that I think we should ignore most of the "common sense" beliefs--most of which are bullshit--and assume that anything is possible. 


*Berube, Life As We Know It.