February is Jewish Disabilities Awareness Month. Much of the discussion about disabilities is about inclusion, and I think we are doing better but not enough better. Within the Beth El community there are many families with their own stories to tell. Spurred by my preparations for the funeral this week of the adult brother of congregant Hanna Gutmann, I did some internet searches about Down Syndrome which Sammy Gutmann and his family handled in really admirable ways through his 60 years of life. I found the following blog post that spoke to me about the assumptions and conclusions we often make about disabilities and how often they may be off target. This is longer than my usual, but I think you will want to finish it.
Here is the blog post of Hallie Levine Sklar, a mom of three, Jewish even.
A couple months ago, I was playing at the beach with my three small children—Johanna (Jo Jo), aged 4, Teddy, aged 3, and Geoffrey, then 15 months—when a 40-something woman came up to me. “Your daughter is absolutely gorgeous,” she said beaming. “I’ve been watching her for a while.” “Thanks,” I said. Jo Jo is four, and has Down Syndrome. People often stare at her. It might be because she has Down Syndrome, but I also suspect it’s because she’s so darn cute. Today, she was wearing a hot pink bikini and strutting around the sand singing. Her blonde hair was pulled up into two tight pigtails and except for an occasional snot bubble she looked pretty adorable.
The woman kept standing there, awkwardly grinning. “I’m pregnant!” she finally said. “Great!” I exclaimed. “How far along are you?” “About three months,” she said. Then she burst out: “I think my baby has Down Syndrome.” So that’s what this is about, I thought. “Why?” I asked. “I didn’t do any prenatal testing” she said brightly. “But since I’m 42, I think it’s very likely.” “Um,” I said, really not sure what to say. “Not necessarily. I was only 34 when Jo Jo was born.” “Well,” the woman said, “I have to admit, I’ve been so worried about Down Syndrome that it’s been keeping me up at night. But after seeing your daughter, I feel so much better. She’s such a little angel.” Her voice lowered. “In fact, I think that you’re at this beach now for a reason.” “And what would that be?” I asked distractedly.
Jo Jo had grabbed Teddy’s shovel and pail and was pirouetting around her younger brother, who was now screaming “No, no Jo Jo!” and trying to get it back. “God sent you here,” she said. “So I wouldn’t be afraid of having a baby with Down Syndrome. What a beautiful, special little girl. What a gift.” “Um, yeah,” I said, thinking, that’s exactly what He did, honey, when Jo Jo whirled around and whacked Teddy right in the head with the sand pail. He wailed. She smirked and then whacked him again. “Jo Jo,” I yelled, trying to separate them. My daughter looked at me and beamed at me with her sweetest, most heart-melting smile. “Sorry Teddy,” she said, embracing him with a warm hug. Then she yanked at his hair so roughly he fell face down in the sand. Mass pandemonium ensued. Jo Jo got a time out. As mortified as I was by Jo Jo’s behavior, I was kind of glad the woman had seen it. Not such a little angel now, is she? I wanted to say, but instead I shrugged my shoulders apologetically. “Five o clock meltdown,” I said brightly. “I think it’s time for us to go home.” The woman stared at Jo Jo, wide eyed. “I guess,” she said finally.
Hallie Sklar continues. When I gave birth to Jo Jo, people came out of the woodwork to tell me how “special” kids with Down Syndrome were. They were so sweet, so lovable, always so happy and up for a snuggle. So’s my Labrador retriever, I wanted to say snidely, but I kept my mouth shut. I knew people meant well, but the stereotype of the cheerful, cuddly kid with Down Syndrome was hard to swallow.
Now, four and a half years later, I can say with relief that those adjectives don’t really describe my child. My husband Jamie and I actually realized pretty early on that Jo Jo was one tough cookie: when she was five days old, she shocked the entire NICU when she pulled her post-surgery feeding tube straight out of her nose. When one of the nurses proclaimed her a hellion, we laughed. “You bet she is,” my husband said cheerfully. “She’s our daughter.”
And it’s true. While Johanna may have 47 chromosomes, her full genetic makeup comes straight from us, her parents. She’s got my husband’s impish grin and his impulsiveness. She’s got my pointy ears, my stubbornness, and, quite frankly, my Jewish princess tendencies (especially the love for shopping!) There are people out there who refer to individuals with Down Syndrome as possessing a “magic chromosome” or a “gift from God.” But we think Johanna is magical and a gift simply because she is our adorable, bubbly, vivacious, yummy little girl.
In fact, I think painting kids with Down Syndrome as innocent little angels has the potential to be dangerous, or at least to do them a disservice. It refuses to acknowledge that kids with Down Syndrome are actually human beings with issues and concerns of their very own. I know Jo Jo tries to please, and be a good girl, but like any child, often it’s hard. She’s not as verbal as other kids her age, and because of that, sometimes she communicates her frustrations by say, hitting one of her younger brothers, or throwing something since she’s not able to articulate what she really wants. I wish I had been able to say all of that to the woman at the beach, who probably left that day after witnessing my kids’ Extreme Meltdown wondering if she really still wanted to reproduce. End of blog.
I think there is much wisdom in these thoughts. Anyone who has been a parent knows the challenges that raising kids can bring. Raising a child with disabilities has many of those same challenges as well as additional ramifications that can affect families on so many levels. I think Hallie Sklar sheds some good, helpful light. We have to admire her strength and perspective, and learn from it. What assumptions and conclusions do we make about people with disabilities and how can we do better?
Ponder that and have a great Wednesday. Bill Rudolph
P.S. Tonight is the conversation with White House Counsel W. Neil Eggleston and our own Kenneth R. Feinberg. Candidates for our open rabbinic position are coming each weekend – look at yesterday’s listserv for scheduling and how to give feedback. This weekend we also have the rescheduled Israel Media Series, and Purim in all its delicious manifestations begins with Bit O’Megillah and the Carnival on Sunday.