Someone is Missing From the Debate on Ohio’s Bill to Ban Down Syndrome Abortions –

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Yesterday, The New York Times reported Ohio legislators are soon expected to pass a bill that would “make it illegal for a doctor to perform an abortion if a woman is terminating her pregnancy to avoid having a baby with Down syndrome.”  North Dakota passed a similar law in 2013.

I do not support this kind of legislation –even though our son has Down syndrome. I am pro-choice which means I support whatever reasons a woman chooses for having an abortion.

I do however want more people like my son in the world which bucks the prevalent trend to want fewer people like him.

Am I comfortable with the fact that 60 – 90% of women chose to abort a fetus found to have Down syndrome? No, I’m not. In fact, It angers me. That anger however is not directed at the woman having the abortion. It is at our medical community in its supreme ignorance insisting on relaying antiquated information about Down syndrome to women at what is likely the most vulnerable time in their life.

I place blame as well on our insistence that disability be seen as a profound disadvantage in a society that places an inordinate emphasis on normal. The greatest disability our son faces is what people think of him not his Down syndrome.

The New York Times interviewed two primary sources for coverage of this legislation: Right to life groups and pro-choice organizations. Both responded proforma meaning as expected.

My alliance is obviously with the pro-choice contingent but I was disappointed with their advocates making no mention of people with Down syndrome. They only spoke about ‘Down syndrome’ as a potential cause for concern for expectant mothers.

Would they lose anything in this “battle” by acknowledging they are poised to serve the health care needs of women with Down syndrome –particularly since these women are often recipients of sub-standard medical care and over-represented victims of sexual violence? What harm would it be for pro-choice organizations to acknowledge women with Down syndrome matter to them? Do they realize that women with Down syndrome read newspapers? And – that they may be drawn to topics related to themselves?

There were two contingents suspiciously absent on the debate in the article. The Times reported “the national and local Down syndrome associations have not taken a position on the bill”. How is that possible? If a contentious piece of legislation was being voted on that addressed the constituents of any other advocacy organization I am convinced some kind of statement would be made.

Even a statement that turns the debate on its head: We’re Still Pro Down Syndrome! That must part of their mission somewhere. Can’t you be that and still be pro-choice?

Are the Down syndrome organizations following some code of conduct when it comes to this sort of legislation and the people they advocate for? It reads like: Ignore the people with Down syndrome in all of this, that would not be very uncomfortable for us. When in reality it would read as common decency and what pays their bills.

What about an offensive tact by all interested parties? How about addressing the human rights of people with Down syndrome as well as the rights of women seeking safe, legal means to abortion as parallel concerns without solely responding to legislative tactics? Meaning not wait for a “battle call” but offering an alternative conversation on a long-standing basis.

I expect more from my allies—of which I consider the Down syndrome and pro-choice organizations. This debate doesn’t have to be a zero-sum game where we have to play by prescribed roles.

The  second group completely absent from The Times article were — actual people with Down syndrome. No one who has Down syndrome was interviewed. I find it hard to believe The Times couldn’t find anyone with Down syndrome to weigh in on an issue central to their lives. I understand that it’s harder to find them but certainly a few investigative hours could have been spent finding– one. Or is it that they didn’t even think about it?

To leave people with Down syndrome out of this conversation – however anyone of us stands on the issue– is promoting the worse kind of patronizing thought. I have no idea how my son will think about abortion but I will be willing to listen and accept whatever he has to say.

Part of re-framing this debate into a conversation that is inclusive is to include people with Down syndrome. Let’s not act as if they are already gone.

Macbeth: The Journey

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Thorin had his final summer camp last week at the children’s museum. It was theater class and the play was Macbeth. Think a less bloody and more funny Macbeth.

When Thorin walked in the first day the theater teacher said: “Oh, Thorin, I have waited months to get you in a class. It’s finally happened!”

He melted into the railing he had been leaning against and his mouth made a perfect little O. I was fairly certain I was going to start crying so I got out of there quick.

I texted Ward in the car: “Thorin is adored! I think this is going to be his dreamy, great teacher experience.”

He texted back: “Just see how it goes okay? We need TP.”

I couldn’t be dissuaded though. I knew this was it! And it was. Thorin was moony all week.

The next morning he showed up for breakfast with crown on his head. My heart skipped a beat!

“So, your wearing a crown, uh?” trying to be nonchalant.

“Yes.”

“You know who’s going to love that?”

Before I could continue, Ward yelled over me from the other room: “Kari, please come and help me with something right now.” That is always code for: “Kari, tone it down.”

The third day I picked Thorin up, he was center stage, reclining on a padded bench ala Ophelia staring at her and refusing to go home.

The fourth day he ran away from the group during class returning only after she came for him.

To see Thorin connecting with someone who loved what he loved was a dream come true for me. Learning, teaching and finding passions are intangible gifts that help define us. This teacher saw Thorin.

I see him all the time at home. He is Hulk eating pop corn; a dancing mouse; a ghost; all The Avengers; an old man with a cane; a horse; and a zombie. The other day he pretended to shoot hoops. I said: “Great shot!” He said: “I missed that one.”

Last year Thorin took theater class every month, each a week long, and he never did the final performance.

His teacher held out hope he would this time. Thorin also held out hope.

As I waited outside the theater I saw a crowd gather for all the other students. We had decided not to invite anyone because in the past it seemed to raise the stakes for Thorin. As the teacher walked through she looked at me and shook her head no. I texted Ward: “I wish you were here.”

When I walked in to take my seat I saw Thorin waiting for me in the audience.

“No” I said.

“No.”

As we sat together he leaned his head against my arm.

“Did you have the best time this week?”

He nodded yes.

“Well, that’s the point. You did what you loved.”

How does a boy who is mostly not understood– speak before an audience? The answer is he doesn’t – yet.

He and I held hands as the play started. Ward came in later.

After Ward kissed the top of his head he said: “I wanted to see the play with you, Thorin.”

Thorin stretched his arms up placing on hand on each of our shoulders and very quietly said: “Yay! Mom, Dad and Thorin!”

When it ended and after the applause died down the teacher pointed to where we sat: “We have another hard working actor to acknowledge today, applause for — Thorin!”

I saw Thorin take it all.