My favorite lil’ online guy over there, Noah’s Dad, was posting in a Down syndrome Educational Support group on Facebook, trying to get people over to some post of his about information for parents who have received a prenatal diagnosis of Down syndrome.
When asked why he was reinventing the wheel with this when Lettercase has done an absolutely fantastic job already with their outstanding book and the Down syndrome Prenatal Testing website, he said that he couldn’t support Lettercase or what the good people at Down syndrome Prenatal Testing were doing because they mention “termination” in the booklet.
“Mention” it, you guys.
They don’t advocate for termination, they don’t sway pro-choice or pro-life, they are simply pro-information; getting word out to people.
Rick (- “Noahs Dad”) ended up back-pedaling in that group and then removed his post entirely. He can’t take intelligent criticism, that’s for sure.
Anyway, something similar is going on with Down syndrome advocacy groups, this idea that if termination is MENTIONED, it’s somehow being advocated? Then self-advocates (- people with Down syndrome) say that they’d like abortion to not be mentioned at all in any type of material (- read Mark’s excellent post on all of this, linked here).
You know what I think?
oh wait – wrong species!
Right, right, now we’re talking!
– I feel like this is what some people are doing within the Down syndrome community: sticking their head in the sand just like an ostrich, thinking that if they delve deep enough into those grains, the whole issue will somehow go away.
But you know and I know that it’s not.
Oh no. Not by a long shot.
Pretending that abortion doesn’t exist and refusing to mention it will NOT make it go away.
Moreover, if someone like me – pro-choice, well-educated, from a liberal area and choosing to have children later in life – reads your stuff that is wrapped solidly around pro-life belief or refusing to even mention termination, I’d be turned off.
Meaning, you are isolating the people you hope to reach.
This is what I believe: I believe that it is a woman’s right to choose whether or not to birth her baby. This does not mean that I am pro-abortion, I simply believe that a woman should always have that choice. Not the government, not a doctor, not her partner, only the woman.
And I think that we live in a time of so many misconceptions.
We think that we can have babies until we are in our mid-forties (just like the movie stars do!). We think infertility is something that happens to “those people over there”, it’s not going to happen to us. We think that we can balance work and family life when really, it’s impossible. We think that we need to buy all this stuff, we need this modern life as we are creating it.
But we don’t, I mean, all of this is wrong.
The vast majority of us CANNOT have babies in our late thirties, let alone mid-forties. So many of us do suffer from infertility. We cannot balance work and family life, something always gives. We don’t need to buy so much, live the way we do and consume so much, nor do we need to work so hard.
My point is, when a woman finds out her unborn child is coming with Down syndrome, spina bifida, the gene that causes deafness, when she finds out that her child will have Trisomy 18, you-name-it, any disability – she has a lot to consider.
And I’ll bet she’s scared. She probably does not have experience of or knowledge about disability. She may not have many child bearing years left, if any. She may have conceived the child using in-vitro fertilization even, because she has had issues with fertility. She has her career to consider: how can she care for a child with a disability when she needs to work? And she needs to work because their life is expensive.
The desire to abort has deeper issues.
It’s not often about a mother who just wants to kill her baby. It’s more often about insecurity, about fear, about needing to work with time as it remains. The desire to abort can be complex and if people really want mothers to abort less or to actually bear the fetus that has been discovered to have Down syndrome, you need to address the deeper issues.
Saying “you shouldn’t” or that someone is terrible because they are aborting or have had an abortion simply doesn’t cut it. That won’t work.
I heard about a woman that aborted her baby as she found out that the child carried a gene for deafness. She did not want a deaf child. As a deaf person, I wanted to talk to her, ask her why, I mean, being deaf is not horrible, why abort?
As a woman who is pro-choice though, I respected her decision. For whatever reason, she felt she couldn’t bring a deaf child into the world.
What I wish could have happened was simply that she be given the option to talk with a deaf person, offered information related to her choice that was neutrally-posed.
This is what Lettercase is trying to do with Down syndrome.
And that is why I support them. There is also a collection of invaluable resources on the Down syndrome Prenatal Testing site, which includes information on the Down syndrome Pregnancy site and also on adoption. This link to that page is here. These are simple resources that have great power and what I’d really wish is for this community to support what’s already been worked on and is out there, instead of either trying to reinvent a perfectly functioning (but new) wheel or hide their head in the sand.
Like these guys.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.