This is My Brother, Akiva

Gabe Skop, (he’s the one on the left) now 19, is not a man of many words. Affectionate and warm, he’s always ready with a hug, enjoying many good friendships with guys and girls alike. This year, he’s having a particularly Israeli experience at a Mechina, or pre-army program. The Mechina movement exploded in post-Rabin-assassination-Israel along with the realization of the growing rift between secular and religious Israelis. Gabe’s Mechina, Aderet, is pluralistic, catering to kids who come from all kinds of backgrounds, many of them at a point in their lives where they want the freedom to explore their religious identity in a non-judgmental environment – that is, away from Mom and Dad.

There’s lots of Torah l’shma – learning for the sake of learning – with visitors from all walks of Israel life, religious, cultural, and political. There are no tests but lots of projects for the good of the Mechina as well as the greater community nearby.  One to two days a week they volunteer after school, helping with homework, hanging out, acting as role models for kids who may lack those positive influences in their lives. Gabe’s favorite things of the year have been the intense workouts to prepare them physically for the army, as well as the week long hikes and other trips around the country. It’s camp…for a year.

Each participant is supposed to teach a class during the course of the year. Gabe was not pleased. All year long, he reported about some of his friend’s classes, relating the success stories mostly. In truth, he hadn’t found his topic until about a month ago when I shared Bill Kolbrenner’s article, The Courage to Embrace Imperfection, with him on Facebook. Gabe hadn’t considered that many people, most really, would probably choose to abort a fetus with a known disability – a testable disability, such as Down syndrome. I shared another article or two with him, including Bill’s other article that I love, along with a piece I wrote some years ago, when Akiva was much younger about testing and abortion, or what I describe as the yen for the perfect child.

Gabe was off. Through the Passover break, he read and thought and talked about it with others. A few heated discussions about the topic made him realize that for many, a women’s right to choose should come first and foremost and that it’s not for him to judge. Others disagreed. All this, with Akiva around full time during a long and at times tiring vacation from school.

Back at Mechina, Gabe called me and talked through his presentation – he’s not one for note taking and it can be hard for him to focus through on such stuff so I suggested that he ask friends to help, which he did. At one point, I said to him, “You know, it’s okay if you talk about how it’s hard sometimes with Akiva, or that maybe you wish he didn’t have special needs,” to which Gabe replied, “Oh, I’m older now, I don’t think about that anymore.” I closed my mouth before the flies flew in, wowed.

As it so happened, Miriam and I were visiting Aderet on the same day Gabe presented. We were speaking about inclusion and Shutaf and Gabe liked the idea of speaking right after us – it all worked out so perfectly. Miriam and I did some role playing with the kids and a good discussion was sparked about the rights of people with disabilities – is it truly a social justice issue and does the government really have to provide and should all communities, including more closed ones, such as kibbutzim, be required to accept families who have children with known issues into their communities?

And then, after a short break, it was Gabe’s turn. He scrawled the word, מפגר, or ‘retard,’ on the whiteboard. Asking the crowd what the word meant to him, there was a discussion of the misuse of the term, the redirection, if you will of a diagnosis into a negative word, a curse word even, at times. He gave the dictionary definition and then, put up a picture of Akiva. It said underneath the picture – and it was of Akiva at his cutest, ‘smilingest’ best – this is my brother, Akiva, he has Down syndrome. He went on to explain a bit about the syndrome as well as answer questions about Akiva and his development and what he’s like before moving on to Bill’s article and a heated discussion about abortion. It went well. I was proud, overwhelmed really.

Why? Not because he argued for or against abortion – that’s something for him to work through and understand, even if he doesn’t always agree and he comes by it honestly. We neither tested or thought of aborting – not because I don’t believe in a women’s right to choose but because I didn’t think that I had the right to choose what baby I get. Of course, I don’t really know what I would have done had I known and am glad for that and I can be honest and say there are times I wish it was different but I’m not sorry – there’s not tragedy here, only life lived as best as we, and I, can.

Back to Gabe. That simple statement. האח שלי, עקיבא. יש לו תיסמונת דאון – it was just so beautiful in its completeness and Gabe was completely comfortable saying it. The truth really does set you free.

2 thoughts on “This is My Brother, Akiva

  1. What an interesting article. Thanks.

    We have a daughter with Down’s, and she’s easily the most popular child in the house! There’s something special about these children, always happy, very loving and just a delight to have around. Sure, there can be hard times, but there can be with any child.

    We didn’t have a prenatal test, and had no idea about the Down’s before she was born. Even when we were offered a test with the next pregnancy, my wife refused it. You can’t choose your children, you take whatever precious gift you’re given, and you do your best with them.

    Thanks again

    • Thanks for the comment. I so agree. Parenting is, in many ways, much more complex with my children who are typically developing. Again, I’m not judging what women decide, I just want people to know the facts and I do worry that most don’t want to truly tackle the ethical and moral part of the issue – it’s just too disturbing.

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