What the Down syndrome Community and Ostriches Have in Common…

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?

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oh wait – wrong species!

manost

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.

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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.

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Like these guys.

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Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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20 Comments

  • Meriah, I think you know I’m pro life. I feel like the literature for prenatal diagnosis is (or should be) designed to reach the women who are like you and I each were when we were pregnant with our girls with DS. By mentioning termination, my mind isn’t changed. But by NOT mentioning it, you would have been totally turned off. Yet another reason I love the Lettercase booklet…. It reaches across the liberal/conservative pro life/choice lines because it’s simply pro information.

    I’m so sad I wasn’t in Indy to hang out with you and Moxie!

    • You know, I have reconsidered the bit about being turned off it was NOT mentioned. I don’t think it has to be mentioned (- termination, that is). I think it’s well-written, unbiased, informed content that is most important, not necessarily mentioning termination as an option. I just think that if they *do* mention it, it lends credence to it being unbiased and neutral. Simply presenting information.

      and I am SO SAD you weren’t in Indy too! Phoenix?!! (say yes!)

      • Yes, Phoenix!

        I guess I wonder how many women seriously considering termination would see a resource that doesn’t even mention termination as unbiased? I really like the way it’s presented in the Lettercase booklet, it’s something like “Some women chose to terminate and these are resources that can be helpful in dealing with the emotional whatever…” I probably got the wording all wrong, but it mentions termination in the context of, it’s something some people do, and something with emotional repercussions – which I think are both known facts, but there’s something important in acknowledging them in writing.

    • I would never advocate to take a womans choice away from her, that choice, right or wrong, is between her and the mighty creator. But be real about it, alk the reasons for terminationcan easily, yes frankly easily , be summed up in one word, Selfishness. Rationalize all you want, thats what selfish actions consist of, rationalization .

  • I guess I don’t understand why termination cannot be mentioned. It’s an option, right? To pretend it doesn’t exist is just silly. I’m pro-choice because I believe a woman should have the right to choose and that I nor anybody else should tell her what to do. That’s not my place. But if she does have a prenatal dx of Down syndrome, I’d hope that the Lettercase materials would show her that DS isn’t scary and that it will be OK if she continues on to meet her little one.

    I really hate how certain issues seem to tear apart the DS community…….that’s what really bothers me!

  • I totally agree that to *not* mention termination completely invalidates the source and removes all credibility. Alienating a pregnant, scared, confused woman should not be the goal. Letting her know that the person providing the information presented to her values her fears, and is providing her with *all* the tools and information to allow her to make an informed decision, is what will likely save more unborn babies. Why should the only info they get be full of unicorns pooping rainbows? Biiiig turn-off and a huge pile of negative points for Down syndrome awareness. This topic seems to be somewhat cyclical. Glad it continues to get brought up, but sad the Ds orgs can’t unify their messages.

    • I agree. I mean, I think it’s got to be really hard for them too – because of the pressure they must receive from the right wing/ pro-life contigent. But I do think a lot of effort, energy and resources are lost in not agreeing on a single message and rolling with it…

    • This is a tired argument that totally invalidates the circumstances of the pregnant woman in favor of an unborn fetus. Fetuses cannot make choices because they aren’t fully formed people; pregnant women and mothers are.

  • Prefacing this by saying that I’m a pro-choice, disabled woman with no individual connection to the Ds community.

    I stopped reading Noah’s Dad’s blog a while ago, for various reasons, but one of them was absolutely his attitude towards termination. In particular, I felt that his attitude towards termination of a diagnosed fetus–that it’s always wrong because termination in general is always wrong–failed to give pro-choice people any reason to not terminate. Where I expected to find reasons (self-believed or verified) such as “Most kids with Ds live happy lives” and “There have been many advancements in science and policy that make the lives of people with Ds better than in the past”, I instead found an attitude of “It doesn’t matter if you want this kid or not; termination is always wrong, so you need have the baby”, an attitude that I felt was more likely to push overwhelmed women TOWARDS the decision to terminate, rather than AWAY from it. Because if this man, who claims to have a wonderful life with his son, can’t come up with a reason not to terminate beyond that he believes it to be murder, why would a woman who doesn’t believe that termination = murder not take that as a sign that perhaps termination really is for the best?

    So, yes: I feel that not mentioning termination as an option some women choose risks alienating the very women who are most likely to choose termination to begin with, and that any group claiming to be unbiased must include ALL the available options in order to be taken seriously.

  • I love this. I am not part of the DS community but I see this “don’t mention it” mentality in our SB community too. I was raised in a pro-life community and I definitely lean that way but when my son was diagnosed during my pregnancy I was faced with making the choice and it was not an easy question for me to answer. Not because I didn’t love my son or because I thought he was going to be worthless– it’s a fight or flight reaction. It’s like you just found out the building is on fire and you’re looking for the nearest exit. We were given realistic information and access to support which made a huge difference. Ignoring that abortion exists will not do anything except further distance the disability community from pregnant moms who need support.

  • I had a prenatal diagnosis, and My husband and I made a choice … To have a child with Down Syndrome. (Actually twins!)

    It was not easy.

    Lettercase was an invaluable resource for us, and we support their mission. That writing gave a balanced approach that gave us confidence that we could love and care for our daughters.

    These writers who want to avoid talking about termination ignore the fact that EVERY medical professional I saw discussed termination with me. Asked my husband to leave the room. Asked me if I was pressured not to terminate. Gave me outdated info projecting a significant risk of stillbirth. Every single visit through 27 weeks.

    Yes, every single visit through 27 weeks. With my kind, caring OB-gyn; with the horrified perinatalogist; with the relatively blasé fetal cardiac specialists; and with the high risk OB-gyns at the special delivery unit at the world renowned Children’s Hospital (with the respected T21 clinic).

    We chose our daughters, and that power of choice means something to me. We both agreed that our most challenging life experiences were our most rewarding – and so we chose the challenge.

    And the rewards? Life changing. Amazing. Wonderful. Still lots of challenges, but I would not choose different.

    Ignoring the reality of the prenatal diagnosis experience for a pregnant woman undermines the credibility of advocates for people with Down Syndrome. Ignoring the power of choice undermines the value of people with Down Syndrome.

    • I love this.

      I know what you are saying too, because when I look at Moxie, I often think that: “I CHOSE you.”. It’s a wonderful feeling.

      I love what you said here, “Ignoring the reality of the prenatal diagnosis experience for a pregnant woman undermines the credibility of advocates for people with Down Syndrome. Ignoring the power of choice undermines the value of people with Down Syndrome.” – how well said. So perfectly true. Thank you

    • As the author of the Lettercase book and the co-author of Down Syndrome Pregnancy’s “Diagnosis to Delivery,” I can’t tell you how much this means to me Terry. Because we deliver books primarily to medical providers and local Down syndrome organizations, I often don’t get to know the parents who receive them. I’m so grateful that you found our materials to be helpful during that time. Please feel free to email me at info@lettercase.org; I’d love to be able to share your story at medical conferences.

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