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.

Inclusion: It Also Means There’s Lots Of Ways To Do It

From the New York Jewish Week’s blog, The New Normal: Blogging Disability, April 29, 2013. 

Okay, I know I can be a bit defensive, bristly almost, when it comes to talking about almost anything that I care about. I own that. When it comes to disability and inclusion, I can go a little overboard, but someone’s got to do the dirty work, right?

We were at a meeting: me, my Shutaf team members and with a respected colleague whose expertise is including children with disabilities in educational settings. In a discussion of how to create a program of outreach, education and inclusion for Jerusalem teens, with and without disabilities, she corrected our organization’s definition of what we call inclusion, explaining that facilitating the entry point of people with disabilities into the community of the typical, that is, us, those without a disability, is the only way to describe the term.

I was shocked and upset at having Shutaf’s “reverse-inclusion” model questioned. Okay, maybe a bit defensive too, as my team members pointed out after the meeting. At Shutaf Inclusion Programs in Jerusalem, we serve children and teens with special needs – a broad range of issues are included together – along with their peers who don’t have special needs at a ratio of 3:1. Meaning, those with disabilities outnumber their peers without disabilities, an admittedly unorthodox model. Our aim is to offer the best possible program for both populations, regardless of their differences.

So, when I hear that there’s only one way to include or only one way to define how we include, I get offended. It makes me realize how far we have to go in order to relax, stop defining and just start including. I’m always reminded what Professor Arie Rimmerman, an international figure in the field from the University of Haifa, noted when he visited our summer program last year. He said, forget about definitions and models and ratios, explaining “inclusion means everyone finding their place.” And that means all of us, with all of our issues and frailties, successes and failures, belief systems and cultural backgrounds. I like that, don’t you?

Recently, I wrote about expanding the terms used to describe people with disabilities, or better yet, our acceptance of a greater variety of terms used to for people with disabilities — special needs, cognitively disabled, or, whatever the moniker of the moment is — along with the services that the community offers.

Inclusion has to be a two-way street, an eight-lane highway, and not a four-way stop sign. People with disabilities have limited access to everything: schools, after school, camps, employment, living in the community and beyond. I’m not kidding, here. They really do. “He’s just not independent enough for this program,” I remember being told some years ago about my son. This without even meeting him.  Or, my other favorite line “is he high-functioning or low-functioning?” Funny, you should talk about him with his teacher of the past two years, his best critic but his biggest fan.

Again, it always seems to come down to semantics, as opposed to really making the world a welcoming place for all. Now, in truth, this colleague and I are on the same page, and as we continued our conversation we worked through the chaff, ultimately finding a meeting point that will allow us to reach more teens — with and without disabilities — giving them a chance to see themselves as young leaders, as movers and shakers in the fight for equality for all.

I’m raising the banner for inclusion in the broadest sense. Both my colleagues in the disability community and the rest of the world needs to see my flag, and yours.  Join me and be visible, verbal and upfront about why inclusion matters to you.