2 Glasses in 1 Week. Who’s Responsibility Is It?

Hey,  you keeping score at home?

Akiva just lost another pair of glasses on Thursday.

School says he got on the bus with them.

Shalva says he got off the bus without them.

And I say, “Are you kidding me?”

They got lost on the bus. The bus? It’s like Switzerland. Nobody’s responsible. Bus companies are a law unto themselves, with little requirement to offer anything beyond the most basic of services. After all, the company chosen to ferry a city’s children to and from school – an important job one would think – only win the contract because they were the lowest bidders.

There’s a special place in hell for bus companies.

Drivers? They’re generally a likable lot. Matrons? Some are better than others., and bottom line, they are deeply underpaid. You know what? You get what you pay for.

Akiva Blog

In the ten years of Akiva losing his glasses in Jerusalem, somewhere during the course of his day – and often on the bus – they’ve never been found. What do the bus drivers do with them? Do they throw them out because they can’t be bothered checking in at their various stops to see if they belong to anyone. Only once, and they weren’t Akiva’s, did a bus driver find a pair of glasses and return them to us.

Again, I remind you that Akiva is significantly nearsighted. It’s not like you can pick up his glasses and use them to read the phone book. Truly, they’re only useful to him.

By the way, the recent pair of Akiva’s glasses have his name engraved on the earpieces. Yes, in English, but it is his name. A nice personalized touch that has proven to be useless.

When I asked the lovely and responsible National Service counselor for his group at Shalva why Akiva’s glasses aren’t looked for as he gets off the bus, (as if we haven’t discussed keeping an eye on his glasses before), she said, “well we’re not always there to take him off the bus,” but she’ll make sure they’ll pay more attention next time.

What should I do with that?

Nothing as it turns out. I’m too furious. And we don’t have another spare on hand.

Why? Because we’re lousy parents I guess.

It’s June. The craziest time of the year. I’ve had 3 weddings in the past 10 days, alongside rehearsals for summer Shakespeare, while by day, preparing for Shutaf’s critical summer fundraising campaign for camp due to begin in less than 2 weeks.

I guess, stupidly, we thought we had a grace period before the next pair would go. But I’ve often observed, losing glasses comes in 2’s and 3’s. Well we’ll avoid the 3rd loss as we have nothing to give him this time.

Ira, who was landing in NY as the news played out on Thursday, will make a quick order but it can take up to 3 weeks to get them delivered. Should I pop over to the local glasses store and order a $350 pair? I could but with 2 glasses gone missing in 1 week, I’m shockingly reluctant.

That means Akiva goes fuzzy. Out of focus. Unable to truly see well, until the $50 replacement pairs arrive.

And it’s nobody’s responsibility, as it turns out, but ours.

Akiva and the Missing Glasses: A never-ending story of Disability and Vulnerability.

Let’s talk about vulnerability. And don’t go putting your sad and supportive face on, thinking, “Oh, Beth’s about to tell us another Akiva story.”

I am, but that’s not the point.

I’m here in the house, staying cool, doing my happy Friday thing, fruit crisp in the oven, Ira out buying whatever he’s decided we need.

My phone bleeps. Ira’s telling me some story about Akiva’s glasses being thrown off the walkway at school. The teacher called all flustered with some whole ‘meysa,’ or story, which we immediately tune out. What’s the point in listening? Someone grabbed them off of his face. He was clearly not in a supervised space – whatever, can’t supervise everyone at all times – and the glasses landed, wherever they landed, to join Akiva’s other gone-missing-never-to-be-found-glasses that go missing in a given year.

Ira and I, the good Anglos that we are, buy more glasses. Heck, we support Zenni optical, ordering 4-6 glasses yearly.

The school? They do nothing.

Akiva has lousy sight and while he’s kind of cool being out-of-focus in his daily life, we are not. Wearing glasses has been a task that we’ve worked on, assiduously, since he was about 7 years old. It took years for him to accustom himself to them, and indeed agree to wear them. While he doesn’t necessarily ask for them, he gets that they have some use for him in his daily life.

Akiva also, like many of those with Down syndrome, has a small face, little ears, and a minuscule nose bridge, making fitting him in a good looking pair of glasses a challenge. We’ve tried many types of frames, going back and forth between the more expensive stretchy frames with better quality lenses which we buy locally (they fit the best), to cheaper online options that do the job less comfortably.

Beth and Kiv

What’s school supposed to do? I should be grateful, I guess, that Akiva’s not at risk for the stuff that’s standard procedure in Israeli schoolyards countrywide, where tough and even bullying behavior is too often excused as the norm.

Ira and I get that you can’t keep your eyes on every student, and every event that goes down. We really do. But what about Akiva’s vulnerability in this? What about his inability – truly – to protect himself? What happens – and I assure you I worry about it daily – when the boys are all sent off to use the facilities before breakfast? Who’s watching them then?

In an educational system – and this is a worldwide issue I’d say – predominantly staffed by women, at a certain point, boys are left to do their own thing in the bathroom. Builds independence and all that.

Bullshit.

If a person is vulnerable, then we must be charged with protecting them.

If a person is vulnerable because of disability or age or illness or whatever, then we must put a plan in place for assuring them their safety. Always, and at all times of their lives – cradle to grave. That’s what social services is supposed to be about.

That’s what building and securing the person’s well being – regardless of specific need or age – is all about.

And in childhood, when the responsibility is shared by many different agents, from school to after school programs to other children’s homes on playdates, that becomes complicated.

Parents presume – or they wouldn’t send their children off – that the these other environments have claimed responsibility for them.

Should they?

Can they?

“So, what are you thinking about – for Akiva – after next year?” asked the school advisor recently.

“Nothing,” is what I felt like saying, instead responding in a desultory fashion with whatever the moment required.

What would I like to do?

I’d like Akiva to live at home with us, until he’s an old man, and we’re even older.

I’m down with keeping the helicopter blades permanently turning over him, Ira and I (with the help of Akiva’s caregiver, Indu), continuing to be in charge of fussing over him, making sure he’s happy and well-turned out. You know, well-fed, well-slept and well-watered, clean-shaven, glasses cleaned, blackheads removed (my job), fingernails trimmed (Ira’s job).

In short, loved and respected. Honored and yes, protected.

We don’t see anyone truly applying for the job.

Valuing Differences. Guest Blog by: Jenn Smith

Jenn interned at Shutaf during 2013-2014 academic year.  Originally from LA, she lived in Jerusalem while studying in Hebrew University’s Non-Profit Management and Leadership MA program.  Thank you, Jenn!

Jennifer SmithPrior to my first visit to Shutaf’s afterschool program I was warned that most of the kids would speak little to no English, however with two months of ulpan under my belt, I was confident that I would be able to communicate with at least some of them. Boy was I wrong! When I arrived at the program, the kids were all very warm and welcoming, but once they started talking, I seemed to have forgotten all of the Hebrew that I had learned! A young girl immediately approached me to investigate who I was and what I was doing at Shutaf. A staff member not only had to translate for me, but also respond on my behalf. I was not as fortunate other times that afternoon and often found myself frantically searching for help when a child attempted to communicate with me. I was dependent entirely on the English-speaking staff. Not being able to communicate with the kids made me feel useless and completely isolated from the very people I was there to interact with.

As the afternoon progressed, many of the kids seemed to pick up on my limitation or special need, if you will. One boy took my hand and brought me over to where lunch was being served and merely pointed to the items that he wanted and required my help getting. Another girl, who insisted that we work on her art piece together, simply communicated by passing me a crayon and pointing at her drawing. I knew I correctly interpreted her actions when a huge grin spread across her face after I began adding a little jewelry to the ladies in her drawing! She clearly had not yet learned that every woman is in need of a little bling and I was happy to share such an important life lesson with her! After our artwork was complete, another group of kids gestured for me to join them on the floor for a card game that I was unfamiliar with. They demonstrated first how to play and then handed me the cards so that I could have a turn. They were patient when I didn’t catch on to some of the rules immediately and persistent in trying to find alternative ways to explain something when I didn’t understand their hand mimes the first time. Similar instances occurred throughout the remainder of the afternoon and, by the end of the program, I was baffled as to where the time went!

I had never thought of myself as being a person who has a disability, but reflecting back on my first visit to Shutaf, I now see that I was. Yes, it was only temporary and, in the realm of disabilities, doesn’t even begin to compare, but it did give me a quick glimpse into what many of these kids experience on a daily basis and may continue to throughout their lives. The initial feelings of isolation, exclusion, frustration, and purposelessness that endured when I arrived at Shutaf are typical for a person who has a disability. Although adjusting to this new environment and impairment of mine was difficult and uncomfortable at first, having the kids at Shutaf accept and include me despite my differences, made a huge impact and had me leaving with a sense of purpose. This outcome, I believe, can be attributed to the amazing, inclusive environment that the Shutaf staff has cultivated.

Above all else, Shutaf has taught me to value people’s differences by understanding that everyone has something worth contributing. I was lucky enough to be in an environment with kids who are thoughtful, tolerant, kind, and patient, and also embrace this very notion. Unfortunately, this is not always the case. It is important to remember that although you may not know now what it feels like to be a person who has a disability, likely, at some point in your life, you will (World Health Organization). Keep this in mind before you decide to brush off someone who might be a little bit different from you, or even before you choose to park on the sidewalk, making it virtually impossible for someone in a wheelchair to get somewhere they need to be, instead of spending the extra ten minutes it takes to find a parking spot, or before you opt to not make your business, classroom, program, or whatever else, accessible for everyone because it requires a little extra work on your end or might cost a bit more.

A huge thank you to all of the Shutaf staff and Shutaf participants for the invaluable lessons you have taught me over the last year! I will be sure to share those lessons and I hope you and everyone reading will do the same!