About Beth Steinberg

I co-founded and run, Shutaf, inclusion programs for children and teens with special needs. I'm also a writer and internet content developer with a team called The Honey. I direct local community theater with a group called Theater in the Rough, specializing in experiential productions performed out of doors.

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.

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.


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.

יום האישה הבינלאומי בכנסת – 3 למרץ 2014

Beth Steinberg, Shutaf co-founder, speaks at the Knesset Aliyah Committee in honor of International Women’s Day

Knesset Day!


תודה לכולכם – חברי כנסת מכובדים, ועדת העלייה, עולים חדשים וותיקים, אורחים. טוב להיות כאן היום, לכבוד יום האישה הבינלאומי.

לפני קרוב לשישים ושש שנים, אבא שלי הפליג בספינת הSS Marine Carp. מה היתה המטרה שלו? להגיע ארצה ולעזור למדינה החדשה. הוא לא הצליח – זה סיפור אחר – אבל ב2006 כשעליתי ארצה עם בן זוגי ושלושת הבנים שלנו, סוף סוף כל המשפחה המורחבת שלי הייתה במקום אחד – בארץ ישראל. אבי ז״לֹ ואמי בירושלים, אחי הגדול ומשפחתו בכוכב יאיר, אחותי הגדולה בראש העין, אחותי הקטנה בירושלים – במרחק הליכה של כמה דקות מביתי.

הייתי בת 44 ובעלי בן 45. עלינו עם ילדים גדולים. לא ידענו מה מחכה לנו ואיך החיים שלנו ייראו. ידענו שתמיד אפשר לחזור לברוקלין. (לא לדאוג – אנחנו לא חוזרים)

היום, כשאני מסתכלת אחורה על שבע שנים של עשייה, אני אומרת Wow. יחד עם השותפה שלי, מרים אברהם, ייסדנו את ״שותף״ תוכנית שילוב לילדים ובני נוער עם צרכים מיוחדים. תוכנית איכותית שעונה על הצרכים של כ150 ילדים – ילדים עם צרכים מיוחדים יחד עם ילדים רגילים לגמרי, פה בירושלים. ב״שותף״ בונים עתיד טוב יותר, עתיד משלב יותר, עתיד שבו כולם עובדים, לומדים וחיים – ביחד – בלי להתייחס לתוויות או רמת תפקוד. חלום טוב.

אז הסתכלתי למשהו אחר שגם חשוב לי – תאטרון.

ב2010 הקמתי, יחד עם אומני תאטרון, את ״תיאטרון בתזוזה״.  ״תיאטרון בתזוזה״ מביא לקהל הירושלמי חוויות תאטרון איכותיות, שוות-לכל-כיס, מיידיות ומרתקות. ההופעות מוצגות במקומות יוצאי דופן ובלתי צפויים – בפארקים ובמקומות ציבוריים אשר נגישים לכולם. בקיץ 2013, יותר מאלפיים ומאתיים איש הגיעו לגן בלומפילד בירושלים ליהנות מהצגה באנגלית –  ריצ׳רד ה3, המחזה השייקספירי המוצג ביותר בעולם.

נשמע טוב? נשמע מעולה. אבל יש עוד מלאכה חברתית בארץ ובמיוחד בירושלים. למדתי כאמא של ילד מיוחד שחייבים לעבוד במשותף כדי לבנות חברה תומכת, חברה שחושבת על כל אזרח, על הזכות של כולם להצליח ביחד.

מקוה שנשב שוב בעוד כמה שנים ואעדכן אתכם לגבי ההתפתחויות ב״שותף״ וב״תאטרון תזוזה״, או אולי לגבי משהו לגמרי אחר!

The Beauty of Difference

IMG_4186There she sat, her sister beside her, each dressed in pink – head to toe – with a dusting of powdered sugar on her adorable button nose, a sufganiya, jelly donut, in her little hand. She sat, in that particular way that little kids with Down syndrome sit, with her legs splayed, her posture just a bit off, her head cocked somewhat myopically as she peered through her round, pink eyeglasses. The picture of little girl cuteness with a little something special. I kvelled. I admired. I felt bereft.

I thought of Akiva, not at the Shutaf Chanukah party with me. It would have been hard to bring him – I was busy chatting up parents. Managing Akiva in an unfamiliar setting would have been challenging to say the least. Given that he doesn’t come to Shutaf’s weekly program during the year, the staff on hand, while wonderful, does’t necessarily know how to assist him, and there were many other kids who also needed attention at what was a busy and lively event.

IMG_4171He might have ended up sitting to the side, lost in thought, perhaps a finger or a few fingers in his month, slightly put off by the crowd and by his innate inability to enter the fray – really ever. He also might have wandered around, shaking people’s hands and attempting social interaction which for Akiva involves just a bit more touching than most are comfortable with – it’s one thing if you know him, it’s, it’s another if you don’t know him. This despite his winning smile and gentle nature. He’s just not so cute to the rest of the world anymore.

Definitions of cuteness and beauty, are cultural and local but certain themes repeat themselves, especially in today’s global environment where the internet and youtube determine a person’s celebrity based on their looks, their physical shape, and their popularity. People with disabilities, especially those whose appearance is altered because of genetics and problems related to their underlying condition, are not seen as symbols of loveliness. People with Down syndrome, for example, are often of shorter stature, tending to be rounder in shape (also influenced by lower muscle tone) as they age – why are they all so fat many must wonder, I’m sure – and many often have issues with their teeth, rendering their often gap-toothed smiles, somewhat surprising in their older years.

NoamAnd so what, really? Those of us without genetic disorders to complicate matters, struggle to eat well, manage our weight, get to the dentist and look attractive to the rest of the world on a day-to-day basis. Much as we might judge ourselves, we’re not found wanting before we’ve even left the door.

Jewish educator and spiritual healer, Rabbi Simkha Weintraub, once showed me a fantastic handout that he’d made up for use in his counseling work. Simkha presents a good list of “some possibilities”, not ordered, as he says by “intensity, importance, or suffering.”

What is stigmatized in the contemporary Jewish world
By Rabbi Simkha Y. Weintraub, LCSW © 2008

Not having children
Mental Illness
vinnieLearning differences; Developmental Disabilities
Suicide of a near/dear one
Obesity, or even just overweightedness
Skin problems
Poverty, Homelessness
Employment that is not ‘professional’ or otherwise lucrative and/or high status
Having children pursuing non-professional jobs
Not being married
Dressing in a decidedly unfashionable and idiosyncratic way
Jews by Choice, and those that choose them
Jews of color
Single parents by choice
People whose children aren’t married
Gay, Lesbian, Bisexual, and Transgendered Individuals, and all things connected to them

Akiva and me*Certainly we all know individuals and groups within the Jewish community who do not hold these stigmatizing feelings or ideas, but consider how extensive they are in general, from a bird’s eye view. And, of course, many if not all of these are shared by many in the general culture, alas. This list is not in any order of preponderance, priority, or any other hierarchy.

Quite a list, right? What else might you add to it? 

As Simkha himself notes, not everyone stigmatizes and judges all those on the list, but anyone who’s experienced a moment of stigma, or, of judgement because of difference, or for anyone who has watched someone we love be judged, just because – it hurts. Desperately so. And even if we are caring people, who’ve watched for someone who’s been judged, we may, inadvertently judge and stigmatize someone else. We’re humans. We make mistakes. We hurt others. Willingly and unwittingly. 

So, the next time you see someone who looks different, someone in a wheelchair, someone elderly with a vacant expression, someone who just strikes you as…not quite like the other, pause and admire them. Find their beauty and give it weight and acceptance.

Giving and Receiving


Giving. End-of-year appeals. December fundraising. It’s a rite of passage if you’re a non-profit. Developing a method, telling a story, making a compelling ask to your people, your friends, those who believe in and support your mission. It’s grueling and grinding, filled with weeks of prep work, both tech and admin, writing and re-writing, until you’re ready for prime time.

Some years ago, when Shutaf was still a very new project, I spoke with an experienced and successful fundraiser in Jerusalem. He shared with me how he regularly reached out to the supporters of his organization  – by phone when he can’t see them in person – but that every time he picks up the phone, he hopes that they won’t answer. I  know exactly what he means.

Asking someone to give? It takes tremendous self esteem and yes, belief in your mission. And a good portion of moxie. I deeply respect the desire to give, to give well and to enjoy the act of giving as well as feeling proud that you’ve found and contributed to a cause you like.  Asking? That’s another story.

And yet, where would we be if people didn’t ask. If we didn’t receive those asks and then, open up our hearts and take a chance on whatever project it is. Just because. Just because our friend asked us, or because we read a story that moved us, or because we decided that this was the moment to give.

This December, wherever you’re moved to make a difference, do it with pride, do it with meaning and do it with enjoyment. Know that we, those who toil away, working in the field, deeply appreciate every time you dig deep into your pockets and show us, time and time again that our work is meaningful.

Thank you and Happy Chanukah from Jerusalem.


Shutaf Camp Day 2 – From Joelle Lang

Yet another exhausting, but immeasurably rewarding day at Camp Shutaf has passed; the start of what can only be a beautiful week.

Camp Shutaf has perhaps discovered the absolute best way to start any day with happiness, meaning, and love.  When all the camper groups are still in the “big room” after happily having greeted their counselors, the campers and counselors form a big circle and begin to sing and dance.  While they sing, one camper or counselor skips around the inner circle until he chooses a different camper/counselor to join him and take his place. Meanwhile, the children and counselors on the side sing and clap.  When a camper is chosen to dance inside the circle, the feeling of joy is palpable.  His smile expands and his face lights up.  It is a precious moment.  It is going to be extremely hard to replace this morning ritual when camp comes to an end.

The Shoko Bananas, or “Chocolate Bananas Group”:

The Shoko Banana’s number one camper group rule is that the morning must be started with a smile.  Those smiles do not leave the campers’ faces all day.

The Shoko Bananas began their day making large trains down the slides in the big playground with their counselors, followed by “sport,” where they dribbled soccer balls through poles and scored goals.  Because of their group success in scoring goals, each camper began referring to his friend as “Renaldo,” after the famous soccer player.

The Shoko Bananas took their next activity, scrapbooking, very seriously.  They worked so meticulously and purposefully, it was as if they had visions they were trying to put onto paper.  They were so proud of their finished products, they spent the rest of the camp day showing them off to the other groups.

The Shoko Banana’s final activity was “the balls.”  The campers took turns rolling big, blow-up balls carrying their friends down the hill and back up again.  The Shoko Bananas had such a great time; they could not stop talking about their experiences inside the balls. After climbing out of the balls, their hair ruffled and clothing pulled, each Shoko Banana exclaimed, “aiza kef!,” “what fun!”

Yet another exhausting but rewarding day in the amazing Camp Shutaf has passed and no one can wait to see what fun tomorrow will bring.

Shutaf Camp Day 1 – From Joelle Lang

Stepping through the open doors of Camp Shutaf is like entering into a whole new world. Shutaf is a world filled with laughter and playfulness and love.  A world that brings about smiles and glowing faces, created for the sole purpose of spreading happiness.  Everywhere campers pile onto their beloved counselor’s backs, and make themselves at home in their counselor’s laps.   The joy overcomes you and inspires you to find a way to pay forward the warmness that surrounds the camp.

The best way to describe the Avatiachs, or “Watermelons,” (one of the Shutaf camper groups), and that includes the counselors, is that they are overflowing with energy.

A day in the life of an Avatiach:

After proudly chanting their bunk song in front of the other groups in camp, the overjoyed Avatiachs begin their day by receiving jobs.  Each camper receives a responsibility for the day, which they proudly wear as watermelon-shaped necklaces, ranging from “giving out cereal” to “making sure no one complains.”  The Avatiachs work as a group, each camper is a cog in the wheel that keeps the bunk running.

The first activity of the day was Sport. The sports counselor began with stretches followed by a game of hopping on circles and throwing a soccer ball into a hoop.  The cheers of the Avatiachs could be heard across the camp.

The hot, red-faced Avatiachs then headed to Art.  The minute the highly energized Avatiachs entered the art room they were overtaken by the calm aura of the art instructor.  They made people, animals and stars that were attached to boards making their works of art pop up when pushed down.  The concentration and creative vibe in the art room were clear on the Avatiachs’ faces.

Afterwards, the Avatiachs and all their energy took their lunches outside to the big playground where they swung on swings, climbed ladders and slid down slides.   It was incredible to watch them help each other navigate through the playground tower.

The last activity and perhaps the most exciting was Animals. The campers listened carefully as the animal-activity staffer described the differences between people and animals, and shrieked loudly when he put a goose on the floor for the campers to pet.  The goose did not stay for long.  The campers did however have a lot of fun passing around and giving names to different types of hamsters and rabbits.

The Avatiachs are a fantastic group!  The campers were so kind and excited to be with each other, it did not appear that any camper could possibly feel left out.  In other words, the Avatiachs are like one big, happy family.

After a camp day filled with one fun activity after another, if all the Avatiachs don’t collapse on their beds when they get home, I can definitely assure you their counselors do.

Accepting Grace: The Choice of Prenatal Testing

Originally posted as “Prenatal Testing: Making the Right Choice” in the online edition of Charisma Magazine on June 18, 2013.

Acceptance. Finding grace. Being chosen. In the Old Testament, we are given many examples of ordinary people coping with extraordinary decisions both ethical and moral.

Sometimes they stumble, such as Moses hitting the rock instead of speaking to it at Meribah, or the children of Israel’s Korach-led rebellion in the book of Numbers. Sometimes they are challenged, as in the story of Abraham’s attempted sacrifice of his son, Isaac, or Esther the Jewess becoming wife to Persia’s King Ahasuerus.

Making choices is what life is about, along with gratitude for G-d’s gifts, even the seemingly hard-to-understand ones. When my youngest son, Akiva, who has Down syndrome and autism, was born almost 16 years ago, many people asked me, “Didn’t you know?” or “Didn’t you test?”

I was 34, almost 35, when I became pregnant for the third time. We lived in Brooklyn, N.Y., in a young, upwardly mobile neighborhood with liberal values and a penchant for Mexican food. Our friends and egalitarian-minded Jewish community were made up of lawyers, doctors and other professionals. Disability was present in the greater community, but there were few, if any, children with Down syndrome. Akiva, who was born at home, was and is a chosen and loved child, despite the surprise of his diagnosis.

In the years since his birth, I’ve discovered that for many, choosing not to test for genetic disorders is simply considered irresponsible. Today, prenatal testing is described as safer than ever, and it can determine many genetic aberrations in addition to Down syndrome. Once you’ve tested and discovered an issue, the most sensible and advised course of action, in my world, is to abort the defective fetus. If you don’t test or choose not to abort, you represent a population that is assumed to be, in the words of a Jerusalem-based writer, “traditional or very observant … couples who refuse to have an abortion … [and] prefer to raise a less-than-perfect child.”

Wow. A less-than-perfect-child. Is that the child who goes out drinking in his teens, crashes up the car and flunks out of school? Or is that the child diagnosed at three with autism, learning disabilities or the new epidemic of our time, depression?

Or worse, is it the child who breaks the law and ends up in jail, lost to his family, perhaps forever? It’s a strange and offensive assumption to make, that parents of children with Down syndrome, a seemingly preventable disability—and let’s stretch that to children with other disabilities as well—prefer our children, imperfect as they may be. And how simplistic is it to presume that a person who lives a religion-based life finds it any easier to accept difference than their secular peers, a sort of “Punish me, I deserve this hardship because of my religious commitment”?

As for preferring a less-than-perfect child, to what, I ask? To their typical brethren? When did we lose sight of the ethical and moral issues here, that these are children who were, certainly in our case, planned and desired additions to a family?

Having come to maturity during the age of a woman’s right to choose, most of my circle considers it their absolute right to choose pregnancy and not have it chosen for them. They chose to become pregnant, and unless that choice led to infertility and its corresponding difficulties, they became pregnant. Once pregnant, they set out to have the perfect pregnancy, complete with appropriate exercise classes, stylish maternity outfits and a skilled practitioner who would deliver said healthy baby at the best hospital when the time came. They wanted their babies, those perfect babies, the ones with the number 10 apgar scores at birth, what they believed was their right to receive.

I won’t deny the at times painful facts of parenting my son. He’s chronologically 15 but operates at a much younger level. He sat up unassisted at 22 months, walked at six and requires assistance for most of his basic needs. He also has an excellent sense of humor, a real knack for languages and an almost encyclopedic knowledge of musical theater, much like our eldest son.

Accepting the birth of or later diagnosis of a child with a disability is a moment of reckoning—for the child, for the parents, for the family, friends and extended community. For many, what initially feels like tragedy gradually becomes normal. Discovering that you are capable of loving, caring and accepting difference has a way of changing you for the better. While there are families who are divided by disability, there are families who are united, learning to support each other through challenge and relishing those special and sometimes long-awaited moments of success.

It’s funny. While I reject the notion that we as a family were chosen “to bear this burden,” or that “it was G-d’s will,” and I hated when people said things like, “Akiva couldn’t have been born into a better family,” I recognized that there was a part of me that did feel that we had been uniquely prepared for this mission, perhaps because of our lifestyle as a homeschooling family or because of our supportive religious community or maybe because Akiva was our third boy—we knew how to do this. We chose not to test. We didn’t play Russian Roulette; we had a baby.

הגיעה שעתה של הנדבנות הישראלית

הכתבה המקורית מאת מקור ראשון ב-10 ליוני 2013.

בכל פעם שאני נוסעת לחוץ לארץ בשביל שותף, הארגון שהקמתי למען שילובם של ילדים ובני נוער עם מוגבלויות בחברה, אני נפעמת מרמת המודעות הגבוהה של הקהילה היהודית בארצות הברית לנושא המוגבלויות. המודעות הזאת מתבטאת בנדיבות רבה ונכונות להירתם בכדי לסייע לאלו הזקוקים לעזרה.

בנסיעותיי אני נתקלת בקהילות בהן מטפחים, מעודדים ומשלבים אנשים עם מוגבלויות בחיי הקהילה. מבין בתי הכנסת, בתי הספר והמרכזים הקהילתיים הרבים בהם ביקרתי, רובם ככולם נגישים באופן מלא לנכים, החל מכניסות נטולות המדרגות וכלה בדלתות השירותים הענפים. בבית כנסת אחד ליד פילדלפיה, מועסק מומחה ויועץ לנושאי חינוך, ותפקידו לעבוד בשיתוף עם הרכז החינוכי של בית הספר בכדי ליצור תוכניות לימוד המסייעות לילדים מוגבלים להתכונן לבר המצווה שלהם ומקדמת את השתלבותם בכיתת הלימוד כתלמידים מן המניין. לאותו בית כנסת יש בימה הנגישה לנכים המאפשרת לכולם לקחת חלק בתפילה המועברת במקביל בשפת הסימנים למען חברי הקהילה החירשים. מדהים, לא?

בירושלים, בתי כנסת ומניינים מתכנסים במקלטים, בתי ספר ומרכזים קהילתיים אחרים ברוב המקרים אינם נגישים לבעלי מוגבלויות, מקומות הישיבה והשירותים אינם מותאמים לצרכיהם של קבוצה זו. בקהילות אורתודוקסיות, הבעיה כפולה שכן ישיבה בנפרד מקשה על זוג הורים לנהל ולטפל בצרכים של ילדיהם.

בארה”ב מושקעים מאמצים רבים בכדי להגביר את המודעות בקרב רבנים ואנשי חינוך מתלמדים לגבי ההתייחסות לבעלי מוגבלויות. זו יוזמה מבורכת אך היא לא שמה למטרה את ראשי הקהילה אשר רובם אינם מכירים כלל את הנושא. המצב רחוק מלהיות אידיאלי, אך עם זאת, המצב עדיף בהרבה ממה שקיים בארץ.

תתארו לכם כיצד מערכת החינוך הייתה נראית אם רבנים ומורים המקבלים תקציבי מדינה היו מחויבים לעבור הכשרה והדרכה בנושא חינוך ילדים עם מוגבלויות כחלק מהכשרתם הבסיסית. אלה היו יכולים בתורם לחנך את חברי קהילותיהם ותלמידיהם, לגרום להם לרצות להפוך את בתי הכנסת והמרכזים הקהילתיים שלהם לנגישים וכוללניים יותר ולהעלות על סדר היום עיסוק הלכתי בסוגיות הקשורות לטיפול בבעלי מוגבלויות בשבת ובחגים.

מימון של בתי כנסת ויוזמות קהילתיות בארצות הברית הוא קשה להשגה, אך לפחות המיזמים הללו זוכים לתמיכה של הרשויות המקומיות. בישראל, קיימת מודעות לנושא, בנושא הנגישות חוקקו חוקים בעניין, אך היישום והאכיפה חסרים כתוצאה מהיעדר אמצעים כלכליים. כאשר יש צורך במסגרות מיוחדות, עיריות עמוסות מסתמכות על ארגונים ללא מטרות רווח, להרים את הכפפה ולהשיג מימון. כתוצאה מכך, ארגונים כמו שלי יוצאים לרחוב בכדי לגייס כספים. אני מבינה וחווה באופן אישי את התהייה “איפה הנדבנים הישראלים?” בתי יוקרה בירושלים, דירות נופש לאורך קו החוף, עושר בקנה מידה משמעותי קיים במדינת ישראל. בימינו, נשמעים סיפורי הצלחה כלכלית לצד פיתוחים תוצרת הארץ בלי הרף, בכל הזדמנות מזכירים את הנס הכלכלי של מדינת ישראל. אם אכן זו המציאות, מדוע כשאני נשאלת לגבי הנדבנות הישראלית עלי להודות שהיקף המימון מכספים פרטיים הוא יחסית מזערי, שעיריית ירושלים מימנה את הפעילות שלנו רק פעם אחת ושגם תמיכה זו הייתה מצומצמת. הרוב המוחלט של המימון שלנו, הוא מארצות הברית.

הגיע הזמן שישראלים יתחילו לתת חזרה, לחולל שינוי אמיתי בצורה שאנחנו מתייחסים לחברה שלנו.

פגשתי נדבן אחד שפועל בשיקגו, הוא אמר לי ששם, נוקטים בגישה אגרסיבית, הגובלת במאפיונריות כאשר פונים לתורמים פוטנציאלים. בעל עסק מוצלח חייב להחזיר לקהילה, במידה ולא יעשה זאת, הוא יחווה ירידה בעסקים. אכן מדובר בגישה קשוחה, אחרי הכול מדובר בשיקגו, אבל אי אפשר להכחיש את היעילות שלה. תורמים חדשים מתווספים לקהילת הנדבנים, נוצרת שייכות לקהילה ורגשות גאווה נקשרות בנתינה.

זה רעיון לא רע בשביל ישראל, מדינה קטנה בה כולם מכירים את כולם על שווי בתיהם וגובה משכורותיהם. תחושת העיירה הקטנה היא מושלמת לעידוד תמיכה במסגרות מקומיות, כולם מכירים מישהו עם אח או ילד עם מוגבלויות, כל אחד יכול לתת, כל אחד יכול לתמוך. המסר הוא שאפשר להביא לשינוי, תרומה לחברה ונדבנות זה חיוני לחברה בריאה, היא מייצרת אושר ותומכת בנזקקים.

אני סמוכה ובטוחה שהנתינה והנדבנות משאר העולם תתגבר ברגע שהנדבנות הישראלית תתחזק. המחאות החברתיות, המאבק להנגיש את הכותל לבעלי נכויות, מדובר בתנועות שמוכיחות שישראלים יכולים ליצור דיאלוג, יכולים להילחם למען שינוי ומסוגלים לדרוש בפה מלא מהממשלה להתייחס לסוגיות החשובות לחברה. השימוש בעושר פרטי הוא דרך להבהיר לממשלה מה הן הסוגיות העומדות על סדר היום של הציבור ובכך להניע אותם להשקיע מאמצים בהתאם.

בת’ שטיינברג היא המנהלת והמקימה של ארגון השותף, היוצר ומוביל פעילויות ומסגרות לילדים ובני נוער עם מוגבלויות בירושלים בין הגילאים 6-21.