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!

Sleepless in Jerusalem.

By: Shutaf Co-Founder, Miriam Avraham

vin in poolParents of children, teens and adults with disabilities see the world through a very different prism – a unique prism of worry. We worry about different and more things than the rest of you do. The things that are obvious, attainable and easy for typical children can be huge obstacles for a child or young adult with special needs. Other 18 year olds are moving on to a new stage in life – completing a gap year, going into the army or national service. At our house we’re trying to get Vinnie to serve herself lunch.

This latest surreal situation in Israel is scary, especially for Israelis in the south. I can’t imagine. While Jerusalem has been relatively quiet, Vinnie was outdoors during one siren and the loud noise freaked her out. She’s been uptight since then, has had trouble falling asleep and bad dreams.

I worry if I’ll be able to wake Vinnie from a deep sleep so that she’ll cooperate and run down the 3 flights to the bomb shelter in our building. I worry if she’ll act fast enough and figure out what to do if a siren goes off while she’s out walking the dog. I accompanied her one day but she wants to do it herself. (Something we worked hard on to help her gain confidence and be able to do this on her own)

Vinnie’s not going to her school’s summer program because they don’t have any bomb shelters or safe rooms. She’s bored at home, missing her routine. Luckily my husband and I work at home and we are coordinating our time so that we don’t leave her alone in case a siren goes off.

We’re always treading a fine line between protecting her and helping her learn new skills and gain self confidence so she can enjoy being a young adult and become more independent. Yet, in crazy times like these it’s really hard to keep sight of that line. We’re trying to continue a daily routine yet keeping her safe might mean losing a lot of hard earned achievements.

So who can sleep?

#IsraelUnderFire How are children with disabilities coping?

Dear Shutaf Friends,

For children with disabilities and their families, the current barrage of sounds and images are deeply disturbing, from rioting in the city to the frightening blast of the sire. For panicked parents, herding a child with sensory, developmental and/or physical challenges into a public bomb shelter is a nightmare.

Miriam Avraham, Shutaf co-founder and mother to Vinnie, was grateful the siren blared before he daughter’s bedtime, “Vinnie is very sensitive to sounds and can quickly become emotionaly overwrought. I can’t just get her to run down the stairs to the bomb shelter in the middle of the night.”

During this tense time, we need to live our lives as normally as possible. At Shutaf, the means preparing for 3 wonderful and inclusive weeks at our August camp, while solving new challenges caused by the current situation.

  • A more secure venue for camp.  Today, we signed on a newly-renovated space with a safe room on every floor.
  • Increased camper demand.  We’ve added an additional group, making room for more campers.  We’ve maxed out registration and have a waiting list.
  • Keeping teens in camp.  Instead of riding public buses to local activities, teens will take private, Shutaf-arranged buses and do more in-camp activities.

With your help, we can ensure every child’s safety, security and success at Shutaf.           With your help, we can raise an additional $25,000 in scholarship funding for August.     With your help, we can ease parental stress, offering respite to more families.

With our deepest thanks,

Beth Steinberg and Miriam Avraham, Founders, Shutaf

Rena Magun, Board Chair, Shutaf

P.S. Show your support for Israel.  Help send a child to camp.

Jay Ruderman. Give the guy a break would ya?

Jay Ruderman Photo Credit: Noam Galai

Jay Ruderman
Photo Credit: Noam Galai

By: Beth Steinberg

In the seven years since Miriam Avraham and I co-founded Shutaf Inclusion Programs in Jerusalem, I’ve marveled at a much-repeated conversation.

Dramatis Personae:
Beth, Shutaf co-founder
JENcO, Jewish education/community/non-profit worker

JENcO: “Inclusion programs. That sounds really exciting, do you know Jay Ruderman?”

Beth: “Yes, as a matter of fact, I do know Jay Ruderman.”

JENcO: “Have you thought of applying for funding? I heard that they’re doing lots of funding in the area.”

Beth: “Shutaf is proud to be supported by the Ruderman Family Foundation.”

JENcO: “Well then that’s good, right? You’re all set then – I hear he’s giving a lot in that area.”

Beth: “Jay and the foundation are important advocates as well as funders, but they can’t be the only ones. More support is needed.”

JENcO: “Right. Well I’m sure you’ll work it out.”

The rise of the Ruderman Family Foundation in Israel has been one which we’ve followed with pride at Shutaf. We were fortunate enough to meet Jay in the early years, to introduce Jay and Shira to what we had founded, and to receive Jay’s mentorship and interest as well as three years of the Foundation’s support for vocational activities as part of our Teen Young Leadership Program.

Jay’s prodded us to get our message out, to push and push, using social media, blogging and any press we can get, in order to send home the message of inclusion and acceptance as community values.

And we’ve worked. Hard. In addition to putting ourselves out there personally in articles and posts that speak of the joys and challenges of parenting a child with a disability, we’ve knocked on many doors.

The Jerusalem municipality, the Knesset, along with numerous government agencies, organizations, foundations and potential donors who profess to believe in the need for inclusive programs and the importance of professionalizing and improving existing programs for children and teens with disabilities.

We tell people about our innovative and successful year-round inclusion programs for children and teens in Jerusalem. We tell them how many children attend Shutaf programs, more than 150, as well as the types of activities we offer, including our favorite program of all, and the reason we started, summer camp. We share how we’re creating success for all participants and also how we’re struggling to stay afloat financially and find our way to long term sustainability.

And we have that conversation.

Sometimes I say “you know, it really takes a village in order to create a groundswell and make lasting change. Jay needs your voice too.”

Sometimes I say “the Ruderman’s can’t be the only ones out there ‘on the barricades,’ we need other funders to join the movement and help sustain innovative programs such as Shutaf that are taking chances and making a difference.”

I wonder, when did we become so complacent about something so compelling? So willing to put the cause of equality for every member of the Jewish community in the hands of so few? So willing to see Shutaf and programs like it fail because the funding just didn’t come together in a sustainable way to ensure its future.

Doesn’t it matter to all of us? Shouldn’t we all care about this issue? Hasn’t Jay put himself out there enough publicly about the issues, day in and day out? I think so.

Just this week, we visited Jay in the foundation’s new offices in Rehovot. We sat and debated the worth of a heavy or lighter hand when it comes to igniting the power of the community about integration and people with disabilities. Jay, in his modest and almost self-effacing way commented, “I can lead and tell the community where to go…[but] I don’t want to call them on the carpet about what they’re not doing yet, or what they’re doing wrong in my opinion.”

It’s time to give the guy a break and join him in the fight for inclusion – as a donor, as someone who wishes to be educated about the issues  – everywhere, for everyone.

If we work together…everything is possible.

“Shutaf is a family.” Guest blog by Jenny Kaufman

jenny

Shutaf is a family. I’ve seen it in action each and every day that I come into
my internship. My name is Jenny Kaufman and I have been interning at Shutaf for the past four weeks or so. I came to Israel on a program called Onward Israel, which partnered with the overnight camp that I am a counselor at in America. In order to supplement our summer as camp counselors in America, my camp delegation decided to send eleven college aged students to Israel to pursue internships and allow us to live in Israel in hopes that we can bring a piece of Israel back to camp
with us. One of my favorite days interning was when I had the opportunity to go
and hang out with all the kids in Shutaf at youth group. Although I speak basically
no Hebrew, the language of smiles, high fives, and simple gestures made it easy
for me to communicate with all the kids at Shutaf. The friendly, all-encompassing
environment made it easy for even I, a foreigner, to feel included and welcomed in
their Shutaf family.

When I was at Shutaf’s youth group, I had the chance to play with live
animals that had been brought into youth group for everyone to pet and hold. One
of the animals that came was a little baby turtle that had to be the fastest turtle
that I had ever seen. When he was placed on the ground he could outrun any of the
rabbits there. After about a half an hour of playing with the animals that little turtle
went missing. Nobody seemed to know where he had gone. Maybe your average
group of people wouldn’t notice if a tiny little turtle about fifty millimeters long
went missing, but this was no average group of people, it was Shutaf, and Shutaf
took notice. Everyone stopped what they were doing to search the room from top
to bottom until the turtle was finally found hanging out underneath a hat on the far
side of the room.

As I conclude my time here in Israel, I know that there is one clear lesson
that I will bring back to America with me from my experience interning at Shutaf:
inclusion. Whether it means including a little baby turtle, children with a variety of
different needs, or a foreigner like myself, Shutaf does it all. Shutaf has given me a
greater appreciation and understanding for what inclusion really means and how
much it can impact everyone. I will be headed off to overnight camp in a few short
days where I know that this value of inclusion will become even more significant
in my life. This summer it will be my personal goal as a counselor to make each
and every camper at camp feel welcome and included and a part of my own camp’s
family.

“The Embodiment” and “Gratitude” – Guest Post by Dana Robbins

This post originally appeared in The Examined Life Journal, University of Iowa Carver College of Medicine, April 2014.

After graduating from Wellesley College, Dana Robbins received a J.D from Columbia University and practiced law for 28 years. Upon retirement, she entered the USM Stonecoast Writers program from which she received an MFA. Dana had a stroke at the age of 23 and often writes about healing.  Her poetry and essays have appeared or are forthcoming in a number of journals and publications, including Drunken Boat, Jewish Women’s Literary Annual, and The Examined Life of the University of Iowa Carver College School of Medicine. She has won several awards including an honorary mention in the 2013 Fish Poetry Contest. 

Dana Robbins

Dana Robbins (right) and her mother

The Embodiment

It was not easy walking into a gym thirty years after the stroke that left my left side spastic and weak, when, well into my fifties, I resolved to tackle the excess weight that age and too much time in front of my computer has deposited around my middle and lower half. At first, I felt painfully self- conscious about the drag of my left leg and the awkward way my left arm pulls upward toward my shoulder. I was frustrated that some of the machines are impossible for me. Over time, I have learned not to compare myself to others and to focus on doing my personal best. Usually, I begin on the bicycle or the treadmill, then progress to the nautilus machines. At the end, I do a brief agility training that involves walking sideways and making boxes with my feet. I call it my dance. Sometimes I laugh when I catch sight of the middle-aged fluff ball who is doing these strange movements.

At the gym, there are the usual range of body types and people: the slim and toned, the painfully thin, the soft and round, the elderly and frail. And then there is the man with the missing limbs, both his legs amputated, bandaged, just above the knee. His limbs stick straight out from his wheelchair like upended bowling pins. I saw him yesterday as his aid placed him on the nautilus. I used my right hand to hoist my weak left leg into position on nearby equipment. As I did my leg extensions, my difficulty seemed minimal by comparison. I looked in his direction and the faintest hint of acknowledgement passed over his face. He has sparse white hair and a powerful torso. He is old but not ancient, maybe seventy. He looks like the kind of man who once wore a suit and headed up a business. His hands, resting on the bar, are balled up, fists without fingers.

I want to say something friendly but his face, scrunched with will power, says no admittance. A bolder person would get right in there and say hello, but I know all too well that kindness can carry a hidden undercurrent of pity, condescension, even dread. I remember how often people would tell me it could be worse, as I, twenty three and disabled for life, fuming thought, yes, I could be dead how much worse could it be. I painfully sensed that even the compliment “you are so brave,” really meant, “and I’m so glad I am not you,” How well I understood what they did not or could not conceal, that my broken body was the embodiment of their fear.

I got tired of healthy people telling me to make the best of it. Did they think I didn’t know that? I loathed the military metaphors; people telling me to be a fighter, to give my all to the battle. The problem is that this kind of thinking gives rise to shame, as if disability is laziness or weakness of the will, as if health is just a matter of trying harder, one more prize in our competitive society. This is why I cringe when I see the advertisements, where a person grinning or looking resolute, announces, “I beat cancer.” Some people will not “win.” Does this make them “losers”? It is bad enough to be ill or disabled, how much worse it is to be branded a “loser,” too. These metaphors obscure the essential truth that some circumstances just aren’t within our control.

In many ways healing is a process of coming to terms. The key word for me is acceptance. Acceptance does not mean liking it. Every day a part of me mourns that I cannot run, jump, swim or dance, that there is not a single craft I can manage, because knitting, crocheting, quilting require two hands. And I will be forever pissed off about it. I think that it is possible to accept an illness or disability without giving in to it. Spiritual acceptance can coexist with a healthy and motivating sense of indignation, even rage. Thus, I am not persuaded by the people who say things like “my illness was a gift.” I find myself thinking “are you kidding?”

Illness is not a battle or a sport, and healing is not a war, but a journey to a destination unknown As Susan Sontag says, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick” (Sontag Susan, Illness as Metaphor, p. 3). I know in my heart that this journey has changed me forever, leaving me with my own unique blend of wisdom, hope, and anger at the so called “normal” world.

I don’t know anything about my compatriot in the wheelchair but I salute his courage. I try to catch his eye to nod as I did the day before, but he is stone-faced. I wonder if he is protecting himself against the insensitivity of others. He stares grimly ahead and I must honor that. Perhaps tomorrow, I will be able to speak to him.

 

Gratitude

My weak leg cramped after seven hours in the airplane seat, I walk bedraggled
and haltingly, in the hallelujah moment of safe arrival as the kind steward helps
me off the plane; much younger than I, he pity-flirts with me, then urges me

to use a wheelchair. “I’d rather walk after sitting for so long,” I say, as I pass
through a gauntlet of a dozen wheelchairs lining the hallway with porters
standing by. “Do you need help, ma’am?” they chorus. I repeat my explanation,

remembering my slow pilgrimage through the stages of survival after the stroke:
how I began in the ICU, flat and immobile within a maze of life-giving tubes,
then moved to a bed, where I pulled myself up to sit by grasping the “monkey bars”

suspended above me, until I gained strength enough to be pushed in a wheelchair;
I trembled the first time, sensing prison between its aluminum rails, felt like an infant
on a potty as I use a commode chair and a shower contraption with a hole in the seat.

After months crawling across therapy mats like a penitent at Lourdes, my limp leg was
encased in a hip to ankle cage for the slow lurch between metal bars; next, a walker,
then a four pronged cane, then a standard cane, until finally, I walked unaided.

How would the people who offer help in the airport know that to me the apparatus
of disability has all the appeal of the electric chair?
As I limp past the stations of empty, waiting wheelchairs, my eyes fill as I picture

one that may someday again have my name on it. After the long passage through
customs and baggage, the cool air touches my face and, although it is midnight,
I am still on my feet.

Stop throwing students with special needs to the back of the bus!

This post orignally appeard in, “Principally Speaking,” on April 27th, 2014. http://dfrydman.blogspot.co.il/2014/04/stop-throwing-special-needs-students-to.html?spref=fb

picture 1

“Some kids are just not ready for inclusion.”

This was said to me by the Early Childhood Special Education teacher at the first school I was principal at. She taught students from ages 3-5 who were developmentally delayed. This is before I knew anything about special education, this was before I had a child with Down Syndrome, this is before I started to educate myself about the disservice we do to students with special needs. But that comment disturbed me to the core. Her comment was response to me suggesting that we combine our typical Pre-K program with the Early Childhood Special Education program. It only made sense to me to combine them. The teachers were trained on the same curriculum, they had students of the same age, and the goals of both programs were similar. Quite frankly, I thought it would have been a harder sell convincing the general education Pre-K teacher to do it. I figured the special education teacher would be thanking me. However, the teacher stood before me trying to explain to me how some of the 3 and 4 year olds were not ready. “They have behavior problems, they are too low academically, etc, etc… I didn’t know much at the time but how far behind academically and behaviorally could a 3 and 4 year old be? So me being me, didn’t listen to her pleas and I combined the classes. The program failed miserably because both teachers didn’t want to work with each other and didn’t believe in the premise.

I learned a lot from that experience. I realized that I was trying to create an inclusive program because it made sense. However, inclusion is not a program. It is not an ingredient in a recipe. I chuckle when I hear parents or educators say after an IEP meeting that things went well and they added a little more inclusion to the IEP. What is that? If now, a student has 40% of his school day Inclusion, then does it mean that the other 60% of his school day is Rejection, Exclusion, Omission, and Segregation? Who would feel comfortable with that? I guess the better question is what percentage would be okay to reject, omit, exclude, and segregate any student in the school? What would you be comfortable with if it was your child, grandchild, or someone you care about?

The point is inclusion is not a program but it is a philosophy, a mindset, a school’s belief system. It is the idea that it is our responsibility as a school community to love, teach, change behavior, differentiate instruction, include, and believe that every student in the school can learn. Children don’t learn in the same way on the same day but they most definitely can learn.

picture 2

I see the effects of the idea of inclusion on a daily basis with my twin boys Ari and Noah. Ari is a great teacher and provides modifications and accommodations to his brother on a daily basis. And most of the times Ari doesn’t care about any of that and he just treats his brother the same. That’s the beauty of it, while we are differentiating learning for kids so that they are successful, we are treating them and accepting them the same. What you come to realize is that all kids have strengths and areas that they need to work on.

Let’s stop doing a disservice to students with special needs by throwing them in the back of the bus and segregating them. We need to allow them to have the same access to great teachers, great instruction, and typical peers (whatever typical might mean).

As my school Helen Jydstrup Elementary goes through some school reform and transformational changes as it pertains to special needs students, I will revisit this topic.

Screwing Up and Coping

By: Beth Steinberg

It should be on my epitaph, or maybe it’s the name of a movie like the Wizard of Oz or, It’s a Wonderful Life. I’d like the name to be a bit more down and dirty, kinda like that famous scene of a Russian roulette game in the movie The Deer Hunter, with a wigged out Willem Dafoe and a scary Christopher Walken. No, that’s not right either. Maybe it’s more like Cheech and Chong’s seminal Up in Smoke.

Ira, Akiva, and Beth at the circus.

Ira, Akiva, and Beth at the circus.

Ira and I played a little Russian roulette about a month ago…and lost. We always lose it seems, just when we’ve let our guard down. Not sure anyone ever gets that really. Don’t blame them, can’t really understand it ourselves.

We had two lovely meals out on that particular Shabbat, a true red-letter event, at two friendly homes. We made some tasty vegetarian dishes to accompany Friday night dinner – it was a big meal around a full table with a host of Akiva fans, including his hosts who know him well. Akiva sat, ate, wandered a bit, even petted their two lively dogs and had success in the bathroom. Whew.

Saturday lunch, it was another big meal around a full table (we were in charge of dessert, a decadent chocolate cake), with a group who was completely friendly to all of us, especially Akiva. Akiva sat, ate, played with toys and then…had a toileting incident on their lovely sofa.

We were both horrified. The hostess was a doll.

As she delicately handled the upholstery on her very beautiful sofa, and told me to relax, that “things happen,” I yammered on apologetically, wondering why we had allowed him to sit on the sofa, why we hadn’t taken him to the bathroom more (he had been taken twice), why we hadn’t brought along a special pad for him to sit on (forgot but then again, he’d done well on Friday and he hasn’t had an accident in quite some time), why we had let our guard down, and of course, why had we bothered taking him out for two meals over the course of Shabbat. That’s a challenge for us with Akiva, who’d never been to house #2.

Lost in the shuffle, of course, was Akiva. On the way home from lunch, freshly attired in clean pants, he was quiet, clearly desperate for his Saturday afternoon of music on the iPad, his way of relaxing – we long ago gave up that Sabbath battle.

I felt badly. He knew, on some level, that things hadn’t gone well, that he hadn’t been able to do what he needed to do in the conventional fashion when offered the opportunity.

Why? I can honestly say that if I knew why, I’d know why this particular skill has evaded him, and us by definition, for so many years.

If only we understood at a more base level, why people, especially those with disabilities, gain certain skills and not others. What makes expressive language such a challenge and receptive language not? I’m using our experiences with Akiva of course, I know for others it may be different. Akiva, who is very skilled in languages is very unskilled in chitchat, in expressing his thoughts, in just saying “hi, what’s new?” And that’s deeply troubling to him, social kind of guy that he is.

Imagine if you NEVER knew what to say, not even the most basic, “My name is Akiva, what’s yours?”

We all know people who are deeply shy, those who do struggle, quite painfully to navigate social settings. Or those, who stammer and stutter, who dream of speaking freely whenever they’d like.

For us, Akiva’s family, as well as others in his life, from his teacher to the therapists and Shutaf staffers who know him well, it’s often a mystery to determine what’s on his mind and what he’d like to share with us.

There are those who would say he functions at X or Y age level but we prefer to see him as someone who has the life experience of a young teen and as such needs to be respected accordingly. But it’s complicated when he needs help with everything he does and when certain skills of independent living continue to elude him.

So, we cope. We respect him. We support him, and welove him. Our own Wizard…in a Wonderful Life.

A Vegetarian on Israel Independence Day

Written by Miriam Avraham this post was originally appeared on April 23, 2012.

Morris and Martha Herman, ahead of their time.

Morris and Martha Herman, ahead of their time.

My dad was ahead of his time. He chose to become a vegetarian in the 1930′s, no doubt influenced by Harav Kook’s philosophy of vegetarianism as an ethical way of life. My dad believed that being mindful of what we eat together with daily exercise was the path to a healthy body, mind and spirit. You might say “duh!” today but he was living according to these principals at a time when everyone around him was eating steaks every night, smoking, drinking and living extremely sedentary lives. He maintained a vegetarian diet even during his service in the US army in WWII – telling us stories of how he dreaded KP (kitchen patrol) during basic training – “The chazer, uch!”.

Thanks to my dad, I’ve been a vegetarian all my life. But I wasn’t always grateful. As a kid growing up in suburban New York, the question kids most frequently asked me was “You’ve never had a hamburger?”. The answer was and still is “No.”. We didn’t even eat peanut butter and jelly sandwiches. My mom’s definition of a sandwich was a two inch pile of lettuce with some cheese. There was nothing to trade in my lunch box. Talk about weird. Being a vegetarian kid in the 60′s and 70′s was weird. I only started meeting other vegetarians as a teen when friends started ‘converting’.

Since there was never a vegetarian option at events, my mom would give us dinner before we went even to the fanciest of weddings, a habit I’ve only recently been able to break. Camp was a real problem since we weren’t just “non-meat-eaters” we were “healthful eaters” and that was in direct opposition to camp fare.

The list of how growing up vegetarian set me apart is long and having passed the “torah” on to my children and grandchildren, the sense of difference gets passed along too I think.

Every year in May I wonder how Yom Ha’atsmaut became the day of burnt offerings. It’s a relatively recent phenomenon since I remember people just enjoying nature, picnicking, going to the beach. My fondest memory of Yom Ha’atsmaut when I first arrived was riding bikes to the beach in near empty streets and having a picnic without the stench of “mangals” burning all around me. I think Israelis see the barbecue as a sign of affluence and I know people love it with a passion. I guess I will always be looking at this minhag (tradition) from the side, with a perplexed look and a nauseous feeling in my stomach.

Caring for Each Other, Across All Spectrums.

Why is the Grass Always Greener? Supporting Every Individual and Family.
By: Beth Steinberg

I wanted a Huckapoo brand shirt. It was the 1970’s, when those multi-patterned and brightly-colored shirts were the rage. They were expensive. My father was a congregational rabbi with four children, all enrolled in Jewish day-schools, and my mother was a stay-at-home parent. Huckapoo shirts just weren’t in the budget.

An example of a Huckapoo shirt from http://www.vintagetrends.com/

An example of a Huckapoo shirt from http://www.vintagetrends.com/

“If I just had one Huckapoo,” I reasoned with my mother, “everything would just be better.”

It was 7th grade and I had just switched schools, travelling 30 minutes to not just a different neighborhood but a more sophisticated zip code. On the first day, when I looked around the schoolyard and compared myself to the other girls, I knew I had some catching up to do.

Fitting in, I soon discovered was going to be complex. My father was a Conservative Rabbi and I was a commuter from a different geographical area relative to the school’s location.

Easy acceptance into the right group was not going to be bought with one shirt, although I never stopped hoping.

The Huckapoo shirt story popped into my head on a recent visit to my health provider’s main office in downtown Jerusalem. My husband and I were reviewing a payment for an emergency ambulance ride with our youngest son some time ago. While assessing our paperwork, the person helping us noted Akiva’s diagnosis, Down syndrome, and said “he’s not in the system.”

That has to be one of my favorite lines as parent to Akiva. “He’s not in the system.” Seriously?

Akiva is almost 17; he’s enrolled in a special education school, receives a stipend from the National Insurance Institute based on his disability and is recognized through the Ministry of Welfare as receiving services.

Incredulous, we had her check. Nope. Not listed as having Down syndrome. I mentioned that he actually has a dual diagnosis of Down syndrome and PDD – NOS, on the Autism spectrum.

“Oh,” she said, with an exultant tone. “You know, if he has Autism, he’s eligible for many more services than if he just has Down syndrome.”

Just has Down syndrome! Another moment of incredulity.

She then proceeded to show us the expansive list of what he could receive with the “right” diagnosis.

In 2014, Autism is that brand-name shirt, that Huckapoo that I never got. The diagnosis that insures you the proper cachet and instant acceptance into the right group, a clique filled with families, children, teens and adults with ASD, or Autism Spectrum Disorder.

And while they may wish their child didn’t have said diagnosis, they tend to group together, with those who are dealing only with their issues. That’s normal, of course. It’s vitally important to chat with parents experiencing similar things, but really, are we living such different lives?

Is developmental delay or cerebral palsy or whatever your kids’ diagnosis is, so scary that you can’t open your heart up to another parent walking a path not so different from yours? I don’t think so. It’s fear, just like the fear felt by those who haven’t dealt with disability at all.

Life with Akiva has meant that I have new understanding for anyone dealing with a challenge, whether it’s a cancer diagnosis or a broken leg. I get that they are navigating something new, something scary, something that pulls at their understanding of life as they know it.

But the cliquishness that develops in the world of disability just depresses me. Seems like something’s getting lost in the shuffle when we get “sorted” by disability, when we get “injected, inspected, detected, infected, neglected” as Arlo Guthrie put it in his famous song, Alice’s Restaurant. When we, those parents and family advocates, feel we only have the interest and strength for our own problem, as opposed to learning to care about the needs of the whole community of people with disabilities.

And I completely respect those families who’ve advocated for their children with Autism, who’ve fought for better services and won. That’s great! But the division of children, of teens, and of adults into labels – each one tossed it’s bone of assorted services and programs – creates division where it could create unity and empathy for shared experiences.

We need to work together, to join forces, in support of each other, in appreciation of each other’s challenges, of our children’s issues – regardless of perceived functioning differences, regardless of our own personal fears and presumptions. That’s how we’ll build an inclusive community. Together.