“That Word”

Yoni and Gabi

Yoni and Gabi

I recently attended a birthday party for a friend. There were sixteen people at the party — I knew four of them — one’s a very close friend of mine. We were all sitting down to eat when somebody used the word retard.

Of course, I’d heard it, but seeing as the guests were mostly strangers to me, I decided to just move on, and let it go. I convinced myself that this person — this girl-who-used-the-word — didn’t know that she was misusing “that word,” that is, using it in a negative way. My close friend, knowing how I feel about people using “that word” (and I truly believe my friend didn’t mean any harm by it, and did not expect the girl-who-used-the-word to react as she did), jokingly said,

“Yoni, did you hear that?”

I tried to laugh it off instead of starting a debate on why we should or shouldn’t say “that word.”

Which did not happen.

Instead, the girl-who-used-the-word, turned around and asked me why “that word” bothered me?

In an attempt to avoid a major disagreement, I kindly explained that the word “retard” bothers me, and would she use another word. Like many people my age, (I’m 23), she thought that it would be amusing to keep using “that word” to get a rise out of me. I continued to explain that I personally don’t like getting into this kind of conversation with random people that I don’t know, let alone at a friend’s birthday party. Just as in previous situations I have been in, where I’ve heard people justifying the use of the word “retard,” the girl-who-used-the-word began sharing her thoughts;

“But I don’t mean anything bad by it,”

“It’s just a word,”

“It bothers you because you work in that field,”

The last one is what really hit home for me, and I was ready to burst but kept my cool. I wanted to say, “No, it bothers me because I have a sister who’s retarded,” just to see what her reaction would be, and what would be the next excuse she would have for using “that word.” Instead, I resisted, and (slightly more aggressively than before) explained that I have my own personal reasons for my reaction when people use “that word,” and could she please respect my decisions.

At this point, I realized I wasn’t going to change this girl-who-used-the-word’s mind, and that in the process had put myself into an agitated mood.

When I find myself in a situation like this, I like to use a technique that I practice when working with kids. The main point of the technique is to bring the conversation back to something to which both parties can relate — individually and together. I asked the girl-who-used-the-word to respect me as a person, and just use a different word. Just like when you ask someone on the bus not to put their feet on the seat. They might not think it’s a big deal, or see why it would bother someone, but usually out of respect for the other person they’ll take their feet down. People in any setting should be able to have safe conversations with each other — to learn and discuss topics that spur different opinions, and in this case, not put the other party guests in an uncomfortable situation.

I ended up leaving that party feeling very irritated. It wasn’t just because “that word” was used, but that I was put into a compromising position — either abandon my principles or come off as an opinionated person who went off on a rant, lecturing someone at a birthday party.

When I mention “that word,” I am not just talking about the word “retard,” or “retarded.” It’s about so much more than that.

Many of us, myself included (my mother can attest to that), take very little time to consider how our words can hurt someone — with or without our knowledge. Whether it be racially, anti-Semitic, sexist or just a mean word, we should all just take a second, and before we open our mouths, try to respect the people around us.  Like my mother always says, “think before you speak!”

Yoni is the Teen Leadership Coordinator for Shutaf. 


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?

Is Accessibility Of Public Spaces So Impossible?

Originally published on the Ruderman Family Foundation blog, Zeh Le’zeh, where it first appeared on February 27th, 2014, in honor of Jewish Disability Awareness Month 2014.

By: Beth Steinberg

As I skied down that gorgeous piste on January 27th, I wasn’t considering that I was about to make myself a living monument to Jewish Disability Awareness Month. That came a few days later, after I fell, had been surgically repaired and was hobbling down the hallways on my brand new crutches in the lovely little hospital in rural Sallanche, France, in the shadow of the majestic Mont Blanc.

Jay Ruderman is fond of saying “everyone in their lifespan will experience disability in one way or another.” He explains further, “people with disabilities are…the one minority group that we will all join one day as we age.” Sobering. A sub-group that we are all likely to experience, whether because of illness, injury or some other aspect of the aging process.

Before you go and stick your head in the sand, consider some facts about disability. People with disabilities are the largest minority group worldwide, an estimated 1 billion people. This is a number that will grow, by the way, as the world’s population grows and as medicine helps us live longer. As a matter of fact, in countries where the life expectancy is over 70 years, people may experience disability for an average of 8 years, or 11.5 percent of their life span. Compelling, no?

I didn’t need to fall that day in order to understand disability. Quite frankly, as a parent to a child who walked at the age of 6, and who continues to need significant assistance navigating his life, I get what disability is about. And yet, to experience firsthand the problems of “crutching” around Jerusalem is to remind myself in a truly palpable way of the challenges that people with physical disabilities in particular experience every day, in a city that is probably one of the least accessible in the world.

Yes, I know that Jerusalem was built 2000 years ago. I get that its infrastructure was not exactly designed by an urban planner and that roads that wind and climb were originally made for mules, not cars. But it’s 2014, and Israel is a country where a certain percentage of soldiers become disabled due to war and army service, separate from those who develop disabilities at different points in their lives and those born with disabilities. It’s time to step up to the plate and force compliance in Jerusalem, as well as in the rest of the country and worldwide, certainly in countries with the ability to support such efforts.

Just recently I was in my favorite local sushi restaurant. On the surface it seemed accessible, that is until I asked to use the restroom, which was down a few stairs. What got left out of the architectural plans and what official signed off allowing the space to open when laws have been set into place that require handicapped accessibility? It boggles the mind. beth-steinberg-walking I’ll bet that almost every restaurant on Jerusalem’s popular Emek Refaim stretch lacks accessible restrooms, let alone accessible entrance ways and pathways. And that goes for one which recently underwent a lovely renovation. On my first visit, I noted that the bathroom is up a flight of stairs. I haven’t gone back.

That’s not all. In Jerusalem, ramps are built at the kind of angles that nobody would want to use them without fear of hurting themselves. Walking paths are continually built from a polished Jerusalem stone that becomes slippery to the point of being downright dangerous during winter rains. And sidewalks remain the favorite place for parking one’s car – never mind pedestrians, babies in strollers, wheelchairs and yes, people on crutches.

Jerusalem, of course, is not alone. For the nine years that we pushed a stroller/wheelchair in urban Brooklyn and NYC we struggled with a mass transit system that wasn’t completely accessible (especially then), as well as with uneven sidewalks and inadequate ramp cuts. I still have lingering elbow problems from maneuvering through snow, over ice, up staircases and through the crowds, in small shops so crowded and narrow I had to leave. I’ve traveled throughout Europe and wondered at the continued inability of major cities – think Rome, Paris and London – to make their cities, their public spaces, their mass transit systems completely accessible. Each one, especially when it comes to mass transit, has complicated access points for anyone dealing with any kind of significant physical disability. If you’ve ever shlepped a suitcase up and down the staircases in the London Underground you know what I’m talking about.

As for me, I’m still getting a handle on this crutches thing. I’ve gone out just a bit since I got home and even the trip to my local health clinic wasn’t exactly a walk in the park, located as it is on a steep street with tough sidewalk access from the car. I’d like to get into work but I’m worried about the elevator to the 4th floor, it doesn’t always work, and the entrance into the building, not so perfectly pitched, and our flooring is a bit uneven. I have a presentation I’m making next week – hoping to find a way to get into the building safely, otherwise I won’t be able to go. Forget about my favorite locations, like the outdoor market, Machane Yehuda, and even my new coffee place around the corner, down a flight of stairs. Until I get more secure handling stairs, it’s just not worth the risk.

But it’s only a couple of months. By April, I should be up on two feet, working at therapy and getting myself back to my crazy schedule of two jobs, working out a few times a week and generally running myself ragged. Because I will be able to – thankfully. What if I couldn’t? Quite frankly, I’d be considering moving out of Jerusalem.

So next time you think to yourself, “We don’t have any people with disabilities in our neighborhood,” consider the possibility that they’re shut into their houses because they’re simply unable to maneuver local streets and byways safely. I say it’s time for a change.

Dancing from our Hearts. Guest Post by Shelly Christensen

Shelly Christensen, MA literally wrote the book on inclusion of people with disabilities, the Jewish Community Guide to Inclusion of People with Disabilities. Her award-winning work as Program Manager of the Minneapolis Jewish Community Inclusion Program for People with Disabilities at Jewish Family and Children’s Service of Minneapolis led her to co-found Jewish Disability Awareness Month with the Jewish Special Education Consortium. Shelly’s work as founder and Executive Director of Inclusion Innovations, where she provides training, organizational and community development, and strategic planning so Jewish organizations and communities can become more welcoming and inclusive, is the standard in the field of sacred community inclusion. She is co-founder of the new Jewish Leadership Institute on Disabilities and Inclusion funded by the Ruderman Family Foundation. Shelly speaks at numerous conferences including Union for Reform Judaism Biennial, ADVANCE, Jewish Federation of North America’s General Assembly, the 2012 Disability Inclusion Initiative, the American Association on Intellectual and Developmental Disabilities, and World Union for Progressive Judaism. Her articles on inclusion and parent perspectives have appeared in journals, and she has published chapters in a number of books including “Judaism and Health,” and the “Jewish Funders Network Disabilities for Funders.” Her personal experiences navigating both secular and Jewish worlds as the parent of a child with a disability gave her the inspiration to innovate the field.


The children and teens at Shutaf followed their Zumba teacher as she showed them several new steps before she started the music. Once the children heard the Latin Hip Hop beats of the music, every one of them busted a move or two. Each was clearly dancing to the beat of his or her own drummer.

As a Zumba “regular” in my hometown of Minneapolis, I spent the last five years learning to salsa-chacha-tango and move my middle aged body in the groove. It may not be a pretty sight, but it sure keeps me fit! In November 2013, while I was in Jerusalem speaking at the Jewish Federations of North America General Assembly, I met Beth Steinberg, who invited me to visit Shutaf. I couldn’t wait! One of the activities on the day I visited was a Zumba class. When I heard that music I peeked in the room. Kids were moving, shaking, jumping and laughing. This was Zumba Shutaf-style and it was glorious!

In my work as a disability and inclusion faith community expert I get to visit a lot of Jewish communities and programs. Like Beth and many of our colleagues, I am a parent. When our middle son Jacob was diagnosed with Asperger syndrome at the age of 15, I marveled at how well our synagogue encouraged his Jewish journey. When Jacob was diagnosed with Attention Deficit Disorder (ADHD) at seven, the religious school and the synagogue community made sure that he was always included with his peers, and that he was taught as stated in Proverbs Mishlei 22:6: Teach a child according to his way. Even when he is old he will not depart from it.

As parents we met stumbling blocks in the form of public school teachers and administrators. Jacob’s first teacher in Kindergarten complained so intensely about our son’s behavior at his first conference, I left in tears. Knowing that his education was at stake, I called the next day to request a change in placement. We were relieved when the principal understood that Jacob was in a bad situation with a teacher who decided to keep the whole class in from recess, blaming Jacob’s behavior. But when she took them out one day for recess and left Jacob alone in the room, my husband and I realized how dangerous someone like this could be to our son’s self-esteem and learning.

During the course of Jacob’s education we met many wonderful teachers who cared deeply about him as a learner. We also had some large lemons in there and I learned how to be a successful advocate in order to learn about Jacob’s educational rights in the public system. This advocacy work also broadened my role as the mom of a child with a disability. Personally, I blamed myself and did not understand why God had chosen to give my child a disability. My anger at God came out in all directions, but was mostly focused on the public educators who just didn’t get that Jacob needed supports and accommodations.

I realized two things: 1.) My anger was not going to help Jacob get his education. Teachers were not going to be bullied by my outbursts when I disagreed with them. 2.) I concluded that God was probably hurting as much as me when Jacob struggled. Instead of staying stuck, I acted:

1.) I became a graduate student to study the needs and attitudes that parents have when they raise a child with a disability and why some like me turn to anger, and others, like I became, felt affirmed and successful when relationships with school partners were collaborative.

2.) I made peace with God, and instead of being so angry, I became God’s partner. In doing so, I joined the Jewish communal field and developed a program through Jewish Family and Children’s Service in Minneapolis, the Jewish Community Inclusion Program for People with Disabilities. In this role I have served my community synagogues, schools and agencies as well as people with disabilities and those who love them, to recognize that inclusion is our responsibility and obligation as Jews and as mensches.

In 2007 I wrote the Jewish Community Guide to Inclusion of People with Disabilities, which has become the go-to manual for organizations around the world. In 2010 I founded Inclusion Innovations, an organization that provides consultations, training, planning and program management to faith community organizations. I now travel around the world working with organizations that are intent upon changing their culture and attitudes, breaking down barriers and supporting meaningful inclusion by people with disabilities and those who love them.

Beth and I share that tikkun olam philosophy. When we see an opportunity to support someone to live a good life, we figure out ways to do that. Jacob made it through public school as a self-advocate. He holds two Associate of Arts degrees and recently graduated from the University of Minnesota with a Bachelor of Arts in Sociology. He is receiving support through Minnesota’s Vocation Rehabilitational Services for customized employment. He has a good life and we are so proud of him.

I pray that every child, teen and adult who desires to live a good life has the opportunities and supports available to them that Jacob has had. Parents of children with disabilities have hopes and dreams for their children, and they too need the support of organizations like Shutaf so their children have a safe and welcoming place to express themselves and their interests, where they feel the loving arms of their community wrapped around them.

Every time I go to Zumba now I do a little Shutaf-style step or two, inspired by those beautiful dancers who taught me that it’s not the perfection of the steps; rather, it’s the dance inspired by our hearts that

Sexuality, Part Two: Knowledge, Awareness, and Feelings.

Guest Blog by Beverly Damelin.

Beverly Damelin writes about her experiences working with Shutaf young adults, ages 15-21, part of our Teen Young Leadership Program. Damelin is trained in Public Health, Sex Education and Group Facilitation, and works in Israel and abroad, with adolescents and adults, specializing in making sex education accessible to all. For more information about Bev: http://www.miniut-bria.com


This is part two of a two part entry.

One of my great teachers taught me that it was good to have butterflies every single time I stood before a new group and that the day those butterflies were no longer there, was the day I should stop doing this work.

When I sat in front of the Shutaf Teen Young Leadership Program for our first session, my butterflies were psyched. I had met the parents of the participants, I had prepared the staff, but I had no idea of the response I would be facing until I had put the word “Sex” out there, loud and clear.

As it so happens, the initial reception of me and my subject was less than smooth. While the Teen Young Leadership Program group is widely diverse in age, maturity and character, a prominent feature of the group is their capacity to share their feelings honestly and directly. Their feelings were overwhelmingly that this subject was embarrassing and awkward for them to hear in a large, coed group.

I was thrilled with this response. After my instinctive reaction of concern, I realized that this might well be the fundamental experience of every group I ever run, adolescents or adults, with special needs or not. Because talking out loud about sex inspires self-consciousness, confusion and at some point, discomfort, for practically everybody. The Teen Young Leadership Program participants, though, were putting those feelings out in the middle of the room. From there we could recognize them, own them and deconstruct them, so that they could get on with the job of learning about themselves and their society. When I showed up for the second meeting I wasn’t entirely convinced that the room would be as full as it had been previously, but it was not only full, it was buzzing. This was the excited energy that lasted till the end of the series. Mine as well as theirs.

During our four meetings, we covered genital anatomy, sexual development, fertility, contraception, sexual vocabulary, personal boundaries, wanted and unwanted behaviors and dating etiquette. There was genuine enthusiasm to participate in role playing and to discuss it or even direct their friends’ acting. Given the opportunity to ask questions anonymously, I was provided a good deal of direction as to where their needs and interests lay. In truth, there questions were typical of all teens, lots of hows and whats. One notable difference was perhaps a lack of demand for comparison to their peers (how often do…, how soon should I…, is it normal that…)

The Teen Young Leadership Program managed to handle much of the discussion as a united group, which fosters an understanding of the wide diversity of interests, capabilities and experience. But certain discussions and exercises were handled in male/female groups or small circles to increase comfort and participation. This was capable only due to the exceptional group of staff members, whose familiarity with the participants and capacity to handle the material produced constructive input during the meetings, and helpful feedback after the sessions.

We all seemed to enjoy an illuminating experience. We succeeded in covering a range of subjects, keeping them concise, in line with the general comfort level and capacity for assimilating the information. I look forward to making this into an annual series, in keeping with the ideal of continuous sex education. Hopefully this model can serve to exemplify what is possible to implement and achieve when an organization is profoundly connected to the needs of its members.

Carrying Walking Sticks and Baby Car Seat at The Same Time: The Problem and a Solution [Adaptive Daddy]

Resposted from http://adaptivedaddy.blogspot.co.il/
Ben Soloway and his wife, Katie, and baby Simon, are currently living in Boston. Soloway, who’s originally from London, moved to Israel in 2008, and is a Jewish educator and trained tour guide, who specializes in Israel tours for people with disabilities. To learn more about Ben, his blog, or to book an a tour for summer 2014 you can contact him at: ben.soloway@gmail.com

Our son (SJ) is three weeks old today.

In that time, I would say that, on balance, I’ve been both relieved and excited to find that I have indeed been able to successfully perform many of the baby related that I hoped I would.

As I think I mentioned one of the tasks that I have been able to do is to carry the baby in the car-seat both up and down the stairs of our apartment building.

Success!…or so it sounds….

Problem is that in all previous trips up and down the stairs I’ve used one hand to carry the car-seat (with SJ in) and the other to hold the banister. That leaves precisely no hands for holding my walking sticks- Mrs T has had to carry these for me as I ascend or descend.

So how can the stairs be tackled when its just me and SJ? Can I carry the car sear, my walking sticks and hold the banister in some way?

In step our wonderful occupational therapist from United Cerebral Palsy of Boston (we’ll call her A) with the following solution: A carrying sling. This sling allows me to carry my walking sticks over my shoulder and across my back in much the same way as an archer might carry arrows. Genius! Here’s is how the system works:

1. A ‘twisty-tie’ (the kind of thing you use to keep a started loaf of bread, closed and fresh) is tied around the diameter of the walking stick about 1 inch below the handle.
2. A second ‘twistie tie’ is twisted around the stick about 4.5 inches from its bottom.
3. Both twisty ties ties are held in place using duct tape.
4. The carrying strap from our camera is then attached. The clasp at each end of the strap is placed around the ‘twisty-tie’ to keep it in position.
5. Immediately next to both ends of the strap are attached two pieces of Velcro – one at either end. Each of these pieces of Velcro is about 8 inches long and a thumb width wide.
6. The Velcro is also held in place by the same pieces of duct tape that are used to secure the twisty-ties.
7. The Velcro at each end of the walking stick is then wrapped around the second walking stick and stuck in place so that both sticks are held in place and are carried together.
8. The sling is placed over the head so that the sticks are carried across my back.

Sound complicated? Check out these pictures and videos… The observant amongst you will notice that many of these pictures are of the earlier version where the sticks were held together by rubber band rather than Velcro, both systems work well, the Velcro is simply more secure and durable. Even if my instructions above are not so clear to follow I hope the photos will at least give you the idea.

Carrying car seat up and down stairs, two walking sticks and holding the banister – done!

Video 1: http://youtu.be/Gy-r1t4cRks

Video 2: http://youtu.be/AQRgimcDyq8


Sexuality, Part One: Knowledge, Awareness, and Feelings.

Guest Blog by Beverly Damelin.

Beverly Damelin writes about her experiences working with Shutaf young adults, ages 15-21, part of our Teen Young Leadership Program. Damelin is trained in Public Health, Sex Education and Group Facilitation, and works in Israel and abroad, with adolescents and adults, specializing in making sex education accessible to all. For more information about Bev: http://www.miniut-bria.com


This is part one of a two part entry.
I have always been a sex educator. Since 6th grade when our school committee organized a series of sex education classes held in small, unisex groups after school and taught by an outside trainer. In conservative South Africa, here was a group of 12-year old girls giggling and gathering intel on everything we could think to ask. After that, backed up by my father’s medical explanations and a few birds and the bees books which suspiciously showed up, I became the go-to girl for my friends’ secret questions.

I arrived in Israel as an 18-year old and after the army went on to study psychology (I had to get to know Freud better) and English Literature, where my final paper compared a Meredith poem to the female orgasm. During my Public Health degree I started working in AIDS education and doing Rape Crisis Counselling. All that remained to be done was my Sex Education Diploma and it was now official.

Around this time, the start of the new millennium, I wondered if I may yet be made redundant by Sex and the City, which seemed to be tracking my personal and professional conversations. But the more things change, the more they stay the same. There was just so much sexual information out there and yet young and not-so-young people were as confused as ever. Confused and ready to talk about it.

Just in my lifetime, what was considered porn is now deemed fit for family hour public television and communication has changed from being parent-controlled to being technologically-overwhelming for most parents, but not for kids over age 9. I am constantly trying to calm parents and teachers about how experienced and sexually competent their kids really are. They definitely have excessive access to sexually explicit material and a highly sexualized culture, but the quality of the information that is bombarding them is dubious and needs to be off-set with responsible alternatives.

In Israel, sexuality education is not part of the school curriculum. Each and every school has the prerogative to clear school time for invited lectures; there is no budget nor dedicated personal. Apart from learning reproduction in Biology, some of the more fortunate schools will receive a 2-hour sexuality lecture delivered once during the entire high-school period, offered by programs like that of the Lewinsky Clinic with which I work.

The communities of people with cognitive, mental, developmental, physical and sensory disabilities are related to as if sexuality is not part of their being. Special education schools and enrichment programs will typically not seek out sex ed, nor do they tend to agree to initiatives, usually stating concern for their pupils/participants.

But sex education must never be neglected; it must be adapted to the necessary conditions of each group. Adolescents and adults with special needs, after all, have the same hormonal drives for sexual outlet as neurotypical people of their age. Many have similar romantic and erotic fantasies. Quashing their hopes and feelings is stealing a piece of independence that might otherwise give them a sense of competence so yearned for.

Sex education is also about understanding consensual sexuality and non-consensual touch or sex. It allows them to learn to speak up about sexual harassment and abuse, but it is not about equating sex with fear. It is hopefully a doorway, opening up to allow individuals with special needs to experience sexual feelings if they so wish, because their bodies and their minds are capable and worthy of it.

Shutaf’s teen sexual education initiative, which I am currently heading, is a 3-tiered program which offers the ultimate model of working with adolescents with special needs. The program involves training of the staff, meeting with the parents and 4 two-hour sessions with the 15-22 year old Shutaf participants, together with their staff. There will be future follow up and ongoing support for the organization should any incidents or queries arise.

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.


Distraught and Isolated

In the Western world we place great store by a person’s intelligence. We have the greatest respect for people who are ‘brilliant’. We can even feel more comfortable with someone with a disability if they have normal intelligence. Here in Israel you hear the term ’emotional intelligence’, referring to people who can connect with another person, any person, with surprising ease, way beyond the norm or capable of easily understanding nuances of a complex social situation.

vin in poolMy daughter, Adina, has incredible emotional intelligence, way beyond what you would think someone with cognitive challenges would be capable of. She knows when someone is ‘for’ or ‘against’ her – accepting her or being judgmental. She also knows, for example, that an aide in a special education school should be respectful of the students. In recent weeks the aide in her classroom has been making her life in school untenable. She calls Adina ‘annoying’ tells her to go ‘cry elsewhere’ or embarrasses her in front of the class. Is Adina super sensitive? Absolutely. Should this aide be allowed to continue to work with teens with special needs? I think you’d agree with me that if she hasn’t changed her behavior in several months then she should be fired. School administration doesn’t see it that way. They’d much prefer to have Adina adapt, the way the other kids manage with this staffer. In fact they will explain to me how Adina is probably misinterpreting the situations and the aide’s intentions.

But I’ve just told you that Adina has higher than average ’emotional intelligence’. You see Adina knows how inappropriate this aide’s behavior is. She knows she is deserving of respect. For Adina, these issues are black and white – which means that she can’t go to school while the aide is there because that feels unsafe and I think she also knows that the aide’s behavior is simply wrong.

In the past I would have picked up the fight to get the aide dismissed. By this time in my life I know exactly how that’s done. But I’m not choosing that path this time around. I think Adina is saying more than just I can’t stand this aide. I think she’s sick of school, sick of people wanting her to fit into their cubbyholes, sick of them trying to ‘fix’ her. I think she’s ready for more choice in her life. She’s ready for less pressure to conform.

But how do I make that possible for her? I have no idea. I thought she had four more years of a special education framework so I’m not quite up on what’s out there besides school. The little I’ve heard about doesn’t seem so exciting. She needs time to transition into adulthood. She’s not ready for a full time job for example. And meanwhile she’s at home.

Talk about feeling distraught and isolated…

Sometimes it’s not forever. Burying a child.

Liel at Shutaf in Dec, 2008In honor and memory of Liel Naomi Liben, z”l, 1997-2012.
Every day when the bus pulled up, a foghorn emerged from the window. “Kachuga” it rang, annoying the neighbors and irritating my mother.  Partially fascinated and partially humiliated at such a hello, we rushed out the door – I was in junior high school, and Jessica, my younger sister, was a grade schooler. As we clambered onto the school bus, there he’d be, grinning maniacally. Michael Liben: full of laughter, good music (only Beatles though) and good cheer.

Our parents were friends, and we were friends too. We saw each other on Shabbatot in synagogue and for two, fun-filled years, traveled to school together – he went to Brandeis and I went to Hillel. The schools, which faced each other across Frost Lane in Lawrence, NY, couldn’t cooperate to create a merged high school because of differing religious philosophies but at least we could share busing.

We stayed in touch sporadically in adulthood until I moved to Israel with my family in 2006 and bumped back into Michael on a more regular basis. His daughter, Liel, came to Shutaf early on after the program was founded, and Michael filmed and edited our first video in 2008. Watch it and you’ll see Liel and her friend, Morane (minute 0:55 and 1:58), having fun at Hanukkah Camp 2008.

Michael and I were living parallel lives, raising our children with special needs – he, with Liel and me, with Akiva. Together with his wife Leora and their two other children, Idan and Sapir, they faced not insignificant challenges, coping as they did with Liel’s heart issues and surgeries, as well as a diagnosis of autism and other developmental stuff.

When we imagine ourselves as parents, we usually picture the ordinary and honorable badges of parenthood – sleepless nights, terrible twos, parent-teacher conferences, and the gloomy teen years – combined with those imagined moments of parental pleasure and maybe standing under the chuppa (marriage canopy) one day. Even the smaller things like “not becoming a doctor,” or “won’t be an A-student,” are mercifully forgotten in the face of an infant’s beauty, a child’s innocence and an older kid’s maturation and social success.

As for the really scary stuff, like disability and special needs, emotional stress and mental instability, chronic illness and worse, death, we push it away, hoping it won’t come knocking on our door. Who wouldn’t? We’re not stupid of course, we’re human, and we put those scary thoughts away unless we absolutely need to deal with them.

Michael’s daughter, Liel, died on Monday night at age 15.5, after a major seizure a few days earlier. A tragic and relatively rare occurrence, it happens, and like all things related to epilepsy is little understood and not completely preventable.

I was speaking with someone today about her death and they started to say, “well…” and I interrupted them and said, “don’t say anything about how the family’s life will be easier because of her death.” Maybe on the outside it will seem so – no long trips back and forth to Nahariya each week to pick up Liel and bring her home for Shabbat, less laundry, less finding childcare when you want to go out for dinner or take a vacation, less doctor visits and social services follow-up – I can go on and on and on, but there will be no ease, certainly not initially. The hole dug into one’s innards, into one’s kishkes, by a child with special needs such as Liel’s, the hole dug by her presence, by her needs, by her life, by her smiles and hugs is probably deeper and more complex in its structure than any other hole dug – I would say – even by the two other children in the family.

And that takes nothing away from one’s other children. Nothing. I fiercely love my two big boys – each of my children occupies an important place in my life, in our lives as parents but Akiva has a particular hold on me, for better and for worse. Liel’s absence will be huge, for her parents, and her siblings too, who must not be forgotten, especially in this early period of grief. And that hole is an amazing hole, filled as it is with years of hard work and devotion, love and laughter, fear and resentment, guilt and amazement. It’s an abyss really, that will take time and healing to soften its edges and fill its gaping interior.

We’re not promised a rose garden when we decide to parent. Sometimes it’s messy, really messy but that doesn’t mean we still can’t be grateful for the chance to do it and do it the best we can. Gratitude is such an important emotion, even at a desperately sad time such as this. I’m sad for Michael and Leora, and for Liel’s siblings, Idan and Sapir. I’m sad for me because Liel’s death makes me think about Akiva’s future and that’s another hole that gapes open, wide and frighteningly. Hopefully, we’ll always fill it with love, laughter, good health and pride in all of his achievements.

May her memory always be for a blessing.
מן השמים תנוחמו