Thanksgiving in Israel? It’s a hummus-cranberry-immigrant mashup

BY: Beth Steinberg, Shutaf Co-Founder

It’s Thanksgiving Dinner. The table is beautifully set and decorated. The meal has all the important elements, turkey, along with wonderful side dishes like sweet potatoes, cranberries, cornbread and….hummus. We’re in Israel after all, where allowances have to be made along with the opportunity to introduce this wonderful celebration to friends and family who may not have experienced it growing up in Israel.

 

Thanksgiving is the celebration that my American-born parents took seriously, along with Jewish holidays and Shabbat observance. It allowed them – children of Russian Jewish immigrants after WWI – to give thanks for all that their families had received in the United States. As a child growing up in New York, it was my favorite holiday. As it wasn’t Shabbat, we were free to cook in a  relaxed fashion, watch the famous parade down NYC’s 5th Avenue, drive and sit in traffic – along with the everyone else – as we traveled to our cousin’s house for a relaxed late-day, celebratory meal.

 

For me, 11 years into my Israel experience, Thanksgiving connects me to the reasons why I moved to Israel: To be part of the Jewish homeland, in a complicated place where I can live freely as a Jew and be part of building, as co-founder of Shutaf Inclusion Programs in Jerusalem, a more caring community of diversity, inclusion, and equality for all citizens, with and without disabilities and from all cultural backgrounds. Thanksgiving is about being grateful for the bounty of foods available in the local markets, the unique smells and tastes of the Levant, and being able to argue about where the best hummus can be had – countrywide. Thanksgiving is about giving thanks for my life as a new immigrant, complete with adult children living in Tel Aviv and Sderot, and my sister up the block from me in Jerusalem.

 

Thanksgiving is that holiday worth adding to the already heavy schedule of holidays here in Israel. Why? Because of its secular nature, it can offer biking and roller skating, followed by a meal that all can share and enjoy, while bringing new traditions and new foods to the table. This year? All will partake at our celebrations – religious and secular, vegan and carnivore – and all will enjoy. A day that all can celebrate the wonders and challenges of the dream of a להיות עם חפשי בארצנו.

 

 

 

Akiva and the Missing Glasses. A NeverEnding Story.

Now, where did I leave you?

It was early June when in the space of one week, 2 pairs of Akiva’s glasses went missing.

The story has continued in amazing, astonishing and mystifying ways.

BEFORE YOU READ ANY FURTHER, please don’t tell us to get him glasses with straps – been there, done that – or to get his glasses personalized – we have – or tell us he’s a candidate for LASIK surgery – right now it’s not on the table – or that he should have contacts – if you’d like the job of putting them in and removing them, but know he’s not a candidate.

Akiva and his glasses – previous pair

HOW IT ALL BEGAN: Two pairs of glasses gone in a week. One pair went missing at school. One pair went missing at Shalva.

DIFFERING REPORTS: What really happened and when the missing glasses were first noticed as gone.

STRANGE MOMENT: One month later, 1 pair reappeared only to go missing again a week later.

THIS WEEK: We swapped him into a cheaper $80 online spare. That pair was grabbed and broken by someone yesterday, at Shalva.

GLASSES COUNT: That’s 3 glasses in 6 weeks.

ALSO THIS WEEK: Ira put on his detective hat and went and chatted up the afterschool bus drivers. The bus and what happens on the bus, is of course, a black hole. One driver said, “sure I know Akiva wears glasses.” Ira inquired if he’s ever found a pair on the bus, and believe it or not, he went and fished up a pair saying who’s are these? Guess what, They’re Akiva’s but an older pair from who knows when. Can you imagine? The bus driver never once asked at school or Shalva, or the children and teens on his bus, if anyone recognized the glasses.

SAID BY STAFF: Now we know to check Akiva when he comes off the bus. That’s because we’ve never discussed this before? And what happens in September, that is if I’m not in jail by then, when you have complete staff turnover as you do each year?

SAID BY OTHER STAFF: These things happen.

The facts as we see them.

AKIVA’S FRAMES: Akiva has worn the same frame for some time as it’s easy to replace online and fits him reasonably well. And, they have his name on them. Ok, it’s in English but seriously. He does occasionally wear another style – yes, they have a strap and yes, that doesn’t matter.

AKIVA’S VISION: Akiva is -9, or 20/1000! He’s significantly nearsighted. Measuring his sight is done passively, but we’ve seen, as he grew accustomed to glasses, how much they help him see better. Yes, people with Down syndrome are often over-corrected but we see that he does need some kind of correction.

Akiva also has strabismus (he’s cross-eyed), and nystagmus (rapid eye-movement, now much better), and has had corrective surgery (as have all 3 of our children, as it runs in the family).

GLASSES COUNT: We estimate 17 pairs. Since 2006, when we moved to Israel, we’ve ordered glasses online, through a few local shops in Jerusalem (1x a year we get a Maccabi discount), and through our cousin the optometrist (good glasses too high a loss factor).

What’s next? Don’t know.

The Problem of Summer Holidays and Working Parents

by: Alisa Fox Coleman, Director of Organizational Advocacy

It’s nearly the end of June. It’s the time that panicked parents ask themselves, “what am I going to do with my kid for the next two months?”

My youngest son is 10, he is the first of my four kids to go through the long and hot, two-month summer holidays while both of his parents are working full-time. We feel sorry for ourselves as parents, having to juggle child-care, and find answers to the problem of the summer. Most of us parents get 14-18 days of holiday each year. Summer holiday is 45 days – these are just  logistics but does anyone think about the summer from our kids point of view?

Going to school is tough, and I am not just talking about the academics. Peer pressure and teacher expectations are an ongoing challenge during the course of the year.

Holidays should not be about any of that.

Holidays are for fun and relaxation – all those adjectives we would use for taking a break from the conscious and subconscious struggles of the school environment. At least, that’s what I think holidays should be.

Holidays are also  a time for informal education. They’re for a different kind of educational experience – of equal importance to every child as the school year is. As a child and teen I remember waiting until my next camp experience. I made so many good friends at camp. I learnt about myself, and how to live and work in a group setting, first as a camper and then as a counsellor. If I could go back to camp tomorrow , I would.

Camp Shutaf Is an oasis of calm amongst the storm of yearly peer interactions . Quality counsellors, and a relaxed family-style environment with fun, low-tech camp activities.

Every child is treated as an individual with their own preferences, abilities, and moods.

When a child walks in to camp in the morning, whatever mood they may be in they will be greeted by counsellors who care,  staff who want them to be happy and have fun.

Sounds obvious, but as we all know as parents, camp is often like a factory – rushing kids on and off buses, and from activity to activity. Often, kids don’t feel good about themselves if there is an activity in which they are forced to take part. Or, it is run by counsellors who are young, and without the proper tools to deal holistically with the kids in their care.

On my vacation, I personally do not want to be forced to do anything that I don’t want to do!

So what is different about Camp Shutaf? Shutaf Inclusion Programs in Jerusalem offers inclusion day camps three times  a year during longer school holidays, for children with and without disabilities. Camp Shutaf’s biggest program is August camp. This summer, 135 participants, ages 6-23, will enjoy 3 fabulous weeks of day camp in Jerusalem.

Shutaf’s innovative, reverse-inclusion model combines a majority group of participants with varied developmental challenges (75%) with a smaller group of participants (25%) without disabilities.

How does this work you may ask?

Firstly, there is a long waiting list for the campers without disabilities.Shutaf’s inclusion ethos, professional program planning and staff training ensures an excellent program in an uniquely, accepting environment .The camp provides quality, personal attention , an inclusive and accepting atmosphere all of which you can only describe when you have seen it in action.

The counsellors listen to the needs of all the kids in their charge. Every kid has good days and bad days or days when they arrive at camp not in the mood.The difference is that their counsellors will listen and be patient and do their best to accommodate and be there for them.

When you do not label kids special things happen. All the kids are looked at as individuals with their own feelings and needs.

The counsellors are not told before who has the disability, they work on dealing with each kid in their charge individually.

Many professionals in the field of disability  have gone to visit Shutaf over the years, and they all admit that it is difficult to tell which are the kids with disabilities and which are without .

When you focus on kids having fun with an emphasis on peer- communication , everyone wins.

Honestly, I wish I could spend my vacation, doing fun activities in a chilled fun environment where people care about me.

Wouldn’t you?

I’m sure all of our kids would.

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.

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.

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.

Do you even like your job?

by: Yoni Arya, Assistant Director of Programming

Camp Shutaf, part of Shutaf Inclusion Programs, offers 3 weeks of camp for 130 campers, teens and young adult participants from the greater Jerusalem area. More than 50% of Shutaf families pay significantly reduced tuition for the program which includes busing to and from camp. Shutaf believes that every family should have access to quality summer programs regardless of their financial situation, and without the family having to jump through hoops in order to  prove that they need financial aid for camp.

I have had the absolute pleasure of working for Shutaf for the last three years, now going on four, and everyday I find something new that I love about job.

The best part of my job at Shutaf is our focus on  answering difficult needs, especially during  summertime, Which can be the most difficult time of the year for children with special needs and their families. Choices for activities are limited, and most of them end up putting families into debt.

I am so proud that Shutaf is a reliable, professional and affordable answer for so many children and  families.

Let me tell you more with a story from a pre-camp home visit. I knocked on the door, Emotionally  prepared (or so I thought) for meeting a mom and her two boys. A ten year old boy, “Moshe”, answered. “Moshe” is super polite, and very sweet – you can tell he is very excited to see me. I sit down with his mother ‘Sara’, and his brother ‘David’, who is thirteen and a Half (a very important point to David), and their older sister who is an IDF soldier.

‘Sara’ begins by telling me that she will only be sending ‘David’ to camp as she is not familiar with Shutaf programs, and only feels comfortable sending her older son. From the way she is speaking, and by informally  assessing  their extremely modest home, I can tell that there is a lot more going on here then she is comfortable sharing with me.

I tell her about camp and the  different activities we offer, and watch as both  boys get excited. We discuss tuition, and I can also see the look on Sara’s face as she wonders how she is going to pay for two children to go to camp for two weeks. Next,my favorite part of the home visit, getting to know the kids. I find out that David  loves to sing and apparently is very good at it. He also loves soccer, carpentry and swimming. “Moshe” is an energetic boy who also loves sports, swimming and playing with friends. The family, thinking I wouldn’t take a problem child, told me that the children don’t really have behavioral issues.  This seemed a little odd to me and the sister had made a couple comments to the contrary. I filled in the children’s information and told Sara to be in touch with our Director, Marci Tirschwell to discuss price (which she brought up numerous times during this home visit).

I wanted a little more information on these children as I felt i didn’t get to see the full picture. After getting permission from the mother I got in contact with the school social worker who handed me over to David’s teacher.  My expectation of this call was that the teacher would tell me that the boys have some behavioral issues but it is a manageable situation. Boy was I wrong. The teacher proceeded to tell me that not only do the boys have some behavioural issues but the financial situation was worst than I thought. She told me that Sara is a very caring mother and tries her hardest but can only send a very plain sandwich for lunch and the school provides clothing for the children.  Sara can’t even pay the 3$ that goes towards the classroom fund. ON top of all this she had to have surgery on her leg so she is not able to work.

We decided, as is our policy, to contact the city social worker and double check the financial situation and see if the social services department would help this family pay for camp. I tried to contact the social worker several times but only once got a hold of a different social worker that told me she would ask  the families social worker to contact me. She hasn’t yet. Meanwhile our counselors get in contact with our families the week before camp in order to update them on relevant information for camp. I was told by one of the counselors that they called the “Cohen” family and were told that the children are not signed up for camp.

Finding this very odd I phoned Sara. Sara told me the children weren’t interested in camp anymore. To try and feel out what the issue was I asked if they would like to come to camp for a week. As Sara is discussing this with David I hear one of the most heartbreaking sentences come out of David’s mouth. “Mom if it’s too much money I don’t want to go”. What is happening in our country when a thirteen year old is willing to pass an amazing summer experience because his Mom can’t afford it?

I immediately told her that I would call her back in a few minutes. I called up Marci and explained the situation. Her immediate response “make it happen”. I am extremely proud to work in an organization that gave me the opportunity to allow this family to come to camp no questions asked. These two children are coming to camp. The mother payed the lowest tuition that I believe we ever offered and this family deserves that. Some of my fondest memories are of camp I don’t think any child should be deprived of that.

The Marci Method

Camp. What a Personal Learning Experience
by Yoni Arya, Assistant Director of Programming

Looking back at Passover Camp, 2016, it was the most educational, exhausting, outstanding and rewarding camp experience I have ever had. And that includes Summer Camp 2014, a summer with a war and a not-so-nice principal at the school space we rented, and a special project which brought 14 kids from Israel’s Southern Communities to camp for 1 week in August.

Too challenging? Not at all. I wouldn’t change this Shutaf experience for anything.

Before I start explaining the amazing lessons I’ve learned and how Shutaf’s talented camp director, Marci Tirschwell, teaches me new skills everyday, I must honor the person who taught me the first rule of child care, my mother.

Yes, my mother. As she will tell you, I was not an easy child or teen (sometimes I’m not an easy adult), but I only felt unconditional love and acceptance, regardless of what I did or how challenging my behavior was. Her lesson of unconditional love and acceptance is one which I’ve taken to heart in my life and within my work with children.

Shutaf Passover Camp 2016 was my seventh camp as a staff member, and I still feel like I’m constantly learning and growing. Aren’t we all? This camp’s lessons were about flexibility and what that really means when working with children.

Since I starting working at Shutaf, I have understood and internalized that every child must be treated as an individual. For example, what about participating in daily camp activities? Not every child is capable of participating for the full length of a forty-five minute activity. Some can’t even last a minute as many of our counselors will tell you.

At Shutaf, Marci’s motto is that we used structured flexibility as our approach to the job of figuring out each child’s needs. Marci has taught all the staff to understand that expecting complete structure and order at all times is a mistake that just ends in unnecessary conflict.

For example, when you ask a camper to do something he cannot do with ease, such as participate in activity for five minutes, you set both yourself and the camper up for failure. You end up spending your day killing yourself to get that camper to do something that will most likely not lead to personal success anyway.  

If the camper isn’t hurting anyone or doing something they shouldn’t why do they have to participate in the activity?

Of course, in a perfect world all Shutaf campers would be happy and participating in activities at all times. In reality, we need to realize what our goals really are for each and every one of them. Do we want full participation at all times? Do we need full participation at all times? Or, is it okay, like Marci would say, to have our campers arrive and leave camp with a smile?

Day in, day out, I’ve seen Marci practice the art of creating structure with flexibility for many campers. She is open to them, always speaking honestly with each camper and listening to their concerns. She allows those campers who need to play soccer all day the right to do so, as well helps those who need to “scream out” their frustration find a safe and proper outlet. Her open honesty is a trait that too many educators lack.

At this past camp, we faced a serious challenge with a participant who personally boasted about being kicked out of camp and school on a regular basis. The truth? He reminded me of myself. It became our joint mission, this after he told Marci on the 2nd day that he expected to be kicked out of camp, to show him how great Shutaf was. We also wanted to show him that he could make it through the week successfully!

On the third day of camp, his plan for getting kicked out of camp was to leave our camp location at the Nature Museum. As I ran frantically around the perimeter of camp looking for him, I was thinking, “That didn’t last too long. There is no way he is staying now.” I found him outside in the parking lot, unwilling to return to camp, determined to keep moving as far away from Shutaf as possible. I suggested that we take a walk over to busy Emek Refaim where there are restaurants and shops, thinking maybe I’d find somewhere, something that would interest him. I called Marci in order to discuss our options (as I often find myself doing), assuming that she wouldn’t approve, especially given that he’d just run away from camp. To my surprise, she was not only okay with my idea, but suggested that we have lunch together (!), our way of showing him that we can work with him, respond to his needs and help him find his place at Shutaf.

On day four, I found myself again out and about with this camper, until I was able to bring him back to camp. I started thinking about my other work at Shutaf, leading workshops and informational training sessions about our inclusion and informal-education methods. It’s amazing to share what we do, and see how we practice what we preach at every Shutaf program. We look at each camper as an individual with their individual needs and take each day for what it is, for each participant, always looking for the positive.

Did this kid suddenly become a model camper? No. But he successfully completed his first camp. Ever. We responded to him. His fears and his needs. And he didn’t run away the last day of camp, a real victory.  

Was it Good for You Too?: Zen and the Art of Surviving Special-Ed Evaluations

This post originally appeared here. 

Picture a nondescript room in any city, state or country. There’s a table, around which the Kangaroo court sits, waiting silently for the parents and child or young person with disabilities to enter the room. Brief introductions are made — a map of the table is needed in order to differentiate one court member from the next — and the questioning begins.

Court: “Akiva, what day is today?”
Akiva: “Sunday!”
Beth: “Yes, Akiva,” I say, quietly on the side, shifting to English from Hebrew. “What day is today?”
Akiva: “Thursday!”

The court rests, with a look that reminds me of Henry B. Swap from Mike Mulligan and His Steam Shovel. That not-so-nice smile that lets you know you’ve been judged and found wanting.

For what? For having developmental delay?

A member of the court shows Akiva a puzzle, perhaps appropriate to a toddler, not an 18-year-old, even one with cognitive issues, and asks, “Akiva, which shape is red?”

Akiva is disinterested. The court is nonplussed. Ira encourages him, and he responds with the color red as well as the different shapes represented in the puzzle as well (he adds in trapezoid, perhaps just to mess with their heads).

Court:  “Kol Hakavod, Good job!” And, that’s when I saw red.

We were back at the Ministry of Social Services. It was a month since we’d last visited, then for a morning of testing which included a meeting with a psychologist, a doctor, and an evaluator.

We first sat with the psychologist, who was conducting what would be called a psychosocial, gathering information about the family, who’s at home, what Akiva does at home, and what are our needs as well as his.

Akiva, who was being ignored, sat in between us, singing and rocking a bit. He was relaxed even though we’d rushed him through his school lunch in order to get to this appointment.

Psychologist: “He’s a little loud. Can you get him to quiet down?”

I whisper in Akiva’s ear that while I enjoy his singing, could he sing a bit more softly. He continues singing while the psychologist continues her line of questioning, mostly to me, a common problem Ira and I often experience. For some reason, ‘Ima’, or Mom, is always deferred to when it comes to family matters.

Psychologist: “Does he always do this? Does he always sing so loudly? I can hardly hear myself think!”

She looks at us in a Henry B. Swap sort of way, and while gesturing to Akiva, says to Ira,

“Please just take him out of the room!”

We were shocked. This is his future we’re here to address, from his right — we hope — to live and work in the community, to the monetary support which will be allotted for his needs.

Let’s jump forward again a month to our meeting with today’s Kangaroo court, as the puzzle is brought out, and Akiva is asked to identify which shape is red.

Beth: “Why is he being asked these questions,”
Court: “Oh, we need to figure out his ‘functioning level.’”
Beth: “You already had your chance, a month ago.”
Court: “But we need to just check. It’s standard procedure.”

Is Akiva a monkey, who needs to jump to your bidding? I don’t think so.

If he answers, correctly or incorrectly, what will that gain him in adulthood. A banana?

They have yet to ask him any real questions about his likes or dislikes. His hopes and dreams. Or ours.

The Kangaroo court? They’ve clearly already decided he’s just not worth much to anyone, if these are the kinds of questions they’re asking him. If this is the best they can do to relate to and get to know a person with developmental delay.

And please, please don’t say, “kol ha’kavod, good job, as if he’s a 3-year-old.” He’s had enough ‘awesomes’, and ‘high-5’s’ to last a lifetime.

How about these questions.

Akiva, when, where, or with whom are you the happiest?

Akiva, do you like musical theater? Which plays are your favorites. And, have you been listening to Hamilton? You have? Cool. I like Hamilton too.

Akiva, what activities do you enjoy best of all?

Akiva, is there something you want to share with us?

Be prepared to wait patiently for his responses. Maybe with the help of a facilitator, explore how to mentor him through these kinds of questions. Have a conversation with his teacher, his classroom buddies, his gardening teacher.

I don’t know, make an effort to get to know him. Not as a monkey. As Akiva.

Members of the Kangaroo court, open your hearts and minds. Focus on this individual, this person. He is not high level. He is not low level. He is not Down syndrome. He is not Autism.

He is Akiva.

 

Disability: It’s a Jewish Peoplehood Issue

This blog was originally posted here on January 8th, 2016

“The arrogance of the able-­bodied is staggering. Yes, maybe we’d like to be able to get places quickly, and carry things in both hands, but only because we have to keep up with the rest of you. We would rather be just like us, and have that be all right.”
-Barbara Kingsolver, ​The Poisonwood Bible

Our youngest, Akiva, who has disabilities and recently turned 18, has had to be re-­evaluated by local government and municipal agencies  ­- we live in Jerusalem- ­ as part of assessing his needs for adulthood. Sounds great. We need to make sure he has access to appropriate services for the rest of his life, and begin to grapple with where he might live in the future.

One recent visit, which included some cognitive testing, a psychosocial analysis of home life ,and a doctor look-­see, also required that we, his parents, fill out a long and frustrating form, rating his independent living skills on a scale of 0­ to 3.

Seriously. 0 to 3? Nobody is a 0, regardless of what their cognitive and independent skills seem. They’re alive. They exist. They’re humans of the world, living and breathing.

Considered the father of modern philosophy, Rene Descartes wrote, “I think, therefore I am.”Maybe that’s the problem. It’s 2016, and we still parse existence based on what we presume thinking or cognition is about.

And I shudder to think of what Akiva’s final number will be, how his cognitive capacity will be assessed, and how that will limit his choices in adulthood. How his number will have little to do with his sense of humor, his friendly nature, and his love of musical theater.

The Jewish tradition of creation teaches us that humankind, male and female, were formed in the image of the Creator, words that are often quoted by those who point to an ethos of human equality, regardless of difference, in Judaism.

The reality is very different. Out there in the real world, people with disabilities, young and old,and those who love them, feel distinctly apart from the rest of the community. While Jewish education, formal and informal, has expanded to offer more opportunities for children, teens and young adults who have disabilities, the number of those who can access or afford such programs, or who are considered sufficiently ‘high-­functioning’ is limited.

We are grateful to live in Israel, where Akiva has had access to a meaningful Jewish education, something that seemed impossible in New York, where he didn’t fit into the hard-­driving, on-­our-­way-­to-­Harvard life of the average Jewish child of our former community.

In Israel, Akiva has also had access to Shutaf Inclusion Programs, an unique informal education model that I co-­founded with another mother, 9 years ago. Shutaf is a place of complete acceptance and inclusion for all children, teens and young adults of all abilities; religious and secular, rich and poor, from all cultural backgrounds. For Akiva, the inclusion opportunities offered at Shutaf are critically important, offering him a place where any perceived developmentor independent skills he lacks are not seen as an impediment to being part of the program.

To find out more, visit our website, or watch our video and support our work. Invite me to visit your community – to teach and talk inclusion, disability and the Jewish community.

At Shutaf, Akiva’s not being discriminated against, as often happens in the world of disabilities, where individuals are divided and parceled off based on their label, or on the idea of which populations of need should be together — as opposed to a united community of people with disabilities, let alone a united and inclusive general community of everyone.

But that doesn’t soothe my feelings of injustice that the system, and our compliance with the system, has removed the Creator and given us a rating scale for assessing self­-worth along with presumed ‘design flaws,’ as opposed to valuing personhood and what makes us different.

That would be an act of Jewish loving kindness whose time has come, because disability is a Jewish peoplehood issue.

​Beth Steinberg is the Executive Director and Co-­Founder of Shutaf Inclusion Programs, offering year-­round, informal ­education programs for children, teens and young people with disabilities in Jerusalem. Shutaf is committed to an inclusive teaching model that welcomes all participants with and without disabilities ­ regardless of religious, cultural and socioeconomic differences. Beth blogs on The Times of Israel. Contact her at  beth@campshutaf.org

The Moments That Shape Us

There are moments that shape us as individuals and experiences that change our outlook on life. We’re not always aware of these changes in the moment, but as we reflect on the journey we have traveled, we can plan our path for the future.

Pat Deegan delivered a paper on the topic of “healing;” “…let the mainstream become a wide stream that has room for all of us and leaves no one stranded on the fringes.” I’m assuming Pat has never heard of Shutaf but she describes my Shutaf vision perfectly…

It’s my first day of camp, there’s an enormous circle of campers and counselors that forms. They break out in song and dance, those participating are absolutely bursting with joy. There are a few individuals uninterested in participating. I try coaxing them into joining in, without any luck… At our after-camp-staff meeting we discuss what we as counselors should expect from the campers during “ma’agal” (circle time.)

With an adjusted outlook, I arrive on the second day of camp. As the circle of counselors and campers forms, I approach one of the few campers that isn’t interested in joining the larger group. I ask the camper if they would like to be a spectator to this “show”, we talk about being spectators at the theater, and choose to clap along, from the sidelines.

Participation is solely based on definition.
“…let the mainstream become a wide stream that has room for all of us and leaves no one stranded on the fringes.”

I’m on the bus with some of our teens from the teen leadership program. We talk about what we’ll need to do once we arrive at our destination, we start talking about recent bus line changes, and a well intending woman pipes up. She looks at me directly and wishes me a “kol hakavod,” (good job,) for spending time with them. “Them?”, I asked. I kindly explained that these are my friends, and we were just talking about the bus line changes, and inquire if she had heard. She hadn’t, so the “chevre”, my “chevre” filled her in.

“…let the mainstream become a wide stream that has room for all of us and leaves no one stranded on the fringes.”

It’s these moments and these experiences that have shaped me into who I am today. Shutaf has found a permanent home in my heart.

This post was written by Rina Shmuel. She has been on staff at Shutaf for three years, is studying to be an Ocupational Therapist, and recently became a presenter of the Shutaf “Inclusion Accelerators.”