My child, a drain on society? A Hanukkah story

I can never forgive a story that I heard today. Of a cab ride, five years ago during Hanukkah vacation.

Dramatis Personae: A boy with obvious special needs, about 13, is accompanied by a teenaged girl, a couple of years older, to his after-Shutaf-camp program in Jerusalem. During the cab ride, the taxi driver, all smiles, chats with ease with his two travelers, playing the radio station requested by the boy with disabilities. The teen remembers feeling pleased at how pleasant the driver was, how accommodating.

Upon reaching their destination and dropping off the boy with disabilities, the driver turned to her, a girl really, not quite 15 at the time, and remarked, “These children shouldn’t be allowed to live.”

She was shocked. She remembers the feeling, the horror of what she felt at his statement, made with such seeming ease. She argued with him as he drove her to her back, trying to respond to his points, which ranged from “They’re a drain on society,” to “What good can they do?” As she exited the taxi, she gave up the battle, but she never forgot what he said.

Who was that 13-year-old boy? My son, Akiva. And, I wonder. Maybe he is a drain on society’s resources? At 18, he’s not exactly independent. He may never be. He’s healthy, psychologically and physically, thank goodness. That’s worth something, no?

We recently took Akiva for his ‘re-evaluation’ at Bituach Leumi, Israel’s National Insurance Institute. They’re the address for assessing individual and family need, be it physical, cognitive or financial, and offering the funds on a needs-based-scale. We last visited them in 2007, shortly after we made Aliyah. Akiva was nine. He was assessed for 100% support, based on a full packet of information from the US, as well as an evaluation done here by social services. We didn’t love the evaluators, or their sophistication, physical and developmentally, both at the Ministry of Social Welfare and Bituach Leumi, but they offered the financial help we needed in order to answer Akiva’s needs.

Now, he’s 18 and needs to be assessed as an adult. We went, first being ushered into a medical examination room. The doctor told us he was an internist, that he wouldn’t assess Akiva’s physical development, exactly what they did when he was 9. He just wanted to know if Akiva was healthy. Um, yes, he is. He asked after medical issues of long ago in Akiva’s babyhood, with some reference to more recent events. Then, we were sent to the psychiatrist. She asked for a psychological and neurological report. Um, he has no current psychiatric or neurological issues. He had neurological issues — as an infant.

“Don’t you have that in his file?” we asked. The psychiatrist showed Akiva’s file. Empty. When we asked why, we were told that his 18-year evaluation starts with a clean file. Seriously? Akiva has a genetic disorder. That doesn’t go away. He can grow, develop, and do many things in his life but he’ll always have Down syndrome. What use is a file that has no historical information?

You know what’s a drain on society? Organizations that waste people’s time and money, that create hurdles through which people in need have to jump through in order to prove their supposed worth. The psychiatrist, when asked about housing and questions concerning adulthood, freely admitted she didn’t know anything about programs, that her job was only to assess how much of the monthly stipend that Akiva would receive as an adult, with no connection again to his previous history, a closed door to her.

She was curious to hear how his progress has been, what achievements he’s made. I thought, “Why would I tell you anyway, you don’t even know him?” Considering Akiva’s historically slower developmental progress I wondered what she’d make of his achievements in any case.

I pictured Akiva — my Akiva-the-adult — warehoused, like a plant, because of this psychiatrist’s assessments and decisions. Put in some institutional setting for people with disabilities, for those deemed as in need, but not worthy enough to deserve more, like the rest of us. You know, the rest of us, measured as we are by the money we can make, the degrees we can earn, the fancy things we can buy.

Maybe we would have been better off had we tested when I was pregnant in 1997. Had we done what society, what that taxi driver would prefer we would have done 18 years ago.

After such meetings, Ira and I always try and parse how we feel, hopefully finding some good in the experience, as Akiva trots alongside. Ira said, “I liked the psychiatrist.” I said, “Really? She was nice I guess.” Ira continued, noting she was polite to Akiva, as was her assistant, not that we were sure what his role was. I grew angrier, “What did she do for us, and for Akiva? She knew nothing about him. What a colossal waste of time!”

Organizations such as Bituach Leumi build on the theme of that taxi driver of five years ago, “what good can they, people with disabilities, do?” Bituach Leumi — an organization with massive resources provided by taxpayers’ dollars — and their counterparts at the Ministry of Social Welfare, never offer the real-time help and information about programs and resources that parents and individuals with disabilities need to know. They don’t have to. That’s left for the overworked and underpaid school social workers, who hopefully know programs (they may not), as well as the person with disabilities enough to make suggestions and recommendations.

Imagine if we worked together. Imagine if we allowed for difference and differentiation, even with its related societal costs. Akiva, along with many of his peers with disabilities, exists. There’s no going back. How’s about we find a way to go forward, together.