קייטנה לילדים בעלי צרכים מיוחדים מחפשת מקום קבע בירושלים

Author: Dana Pollak. This originally appeared in Walla News, on May 7th, 2015

שתי אימהות לילדים בעלי מוגבלויות הקימו מסגרת שתספק מענה לחופשות ולאחר הצהריים עבור
150 ילדים בעלי צרכים שונים. עכשיו, הן מחפשות מקום קבוע שיגרום להן להפסיק לנדוד, לטענתן לעירייה “לא אכפת”. עיריית ירושלים: “הבקשה תיבחן”1469827-18

מרים אברהם ובת’ שטיינברג, אימהות לילדים עם צרכים מיוחדים חיפשו מסגרת לילדיהם לתקופות חופש – חיפוש שלא העלה פתרונות. לכן, החליטו השתיים לפתוח בעצמן מסגרת עמותת “שותף”. כעת, אחרי שנים של פעילות, הן מחפשות מקום קבוע שיארח אותן בחופשת הקיץ. פניות לעיריית ירושלים, העיר שבה פועלת הקייטנה, נתקלו בדחיות חוזרות ונשנות לקבוע פגישות.

“התחלנו לפעול ב-2007 אבל עד היום לא מצאנו בית קבע”, אומרת שטיינברג, “את הפעילויות במהלך השבוע אנו עורכות בבית ימק”א בעיר ואת קייטנת פסח עשינו במוזיאון הטבע. היה מקסים שם וזה יכול להיות מקום מצוין גם לקיץ, אבל עכשיו מדברים על מכירת הקרקע לטובת בנייה. למה לא להשאיר משהו לטובת הילדים?”

“אנחנו שלושה חודשים לפני אוגוסט והמצב קשה. איש לא רוצה אותנו כשמדובר על תקופה של שלושה שבועות בלבד”, אומרת שטיינברג. “בפסח אנחנו הולכים לבתי הספר, אך בקיץ זו תקופה של שיפוצים לקראת השנה הבאה, אז זו לא אופציה. אנחנו מנסות לדפוק על כל דלת בתקווה למצוא מקום שיקבל אותנו ויהיה בגודל מתאים ונעים לילדים וגם מותאם לצרכיהם”.

את “שותף” הקימו שטיינברג ואברהם, עולות מארצות הברית, בעלת קייטרינג ומעצבת גרפית. תחילה, הייתה זו מסגרת קטנה שמטרתה לספק מענה לכמה משפחות שהכירו שחיפשו תעסוקת אחר הצהריים ובחופשות לילדים. “זה התחיל מעשרה ילדים שהעבירו שבועיים בכייף עם ארבעה מדריכים”, אומרת שטיינברג, “כשדיברנו עם ההורים הבנו שכולם הרגישו שלראשונה מצאו את מקומם. זה התחיל כמיזם פרטי לגמרי והפך למסגרת שהיא הרבה יותר ממה ששיערנו”.

כיום מציעה “שותף” תכניות שבועיות ופעילות בחופשות ליותר מ-150 ילדים ובני נוער עם צרכים מיוחדים בגילאי 21-6 בירושלים. הארגון יצר מודל משולב חדש שבו 75% ילדים עם צרכים מיוחדים והשאר הם ילדים “רגילים”. בין התכניות שמפעילה העמותה ניתן למצוא מועדוניות, קייטנות בפסח ובחופש הגדול, סדנאות שילוב לקהלים שונים ותכנית מד”צים- מנהיגים צעירים עם צרכים מיוחדים.

ייחודה של המסגרת הנו, כאמור, השילוב שבין ילדים עם צרכים שונים באותה מסגרת, שילוב מסוג שלא נראה באף מקום. הדבר מוביל לרשימת המתנה לקייטנה, רשימה שכוללת בעיקר ילדים רגילים. “אחרי הכל, גם הם מחפשים מסגרת ואנחנו נותנות משהו שלא קיים כאן. יש הורים שמבינים את היתרונות”, אומרת שטיינברג.

אברהם מוסיפה: “אנחנו עושות בפועל מה שהאקדמאים ואנשי המקצוע מדברים עליו – שילוב. זה לא רק לקחת ילדים בלי צרכים ועם צרכים אלא גם לערבב בין המוגבלויות. היום, מדיניות הממשלה מונעת שילוב שכזה וזה חבל. זה מוביל לבזבוז כספים כשעושים פעילות אחת לאוטיסטים, אחרת לבעלי פיגור ואחרת לבעלי תסמונת דאון. לכן, אין לנו טעם לגשת למכרזים של העיר או של המדינה כשכל מכרז מגביל אותנו לסוג מוגבלות ספציפי ואוסר עלינו לשלב ילדים עם מוגבלות אחרת או ילדים רגילים”.

“אם לא נמצא מקום גדול מספיק נאלץ לקצר את הקייטנה”

השתיים פנו לעיריית ירושלים במטרה לקבל סיוע באיתור מבנה – אך לא הצליחו למצוא אוזן קשבת. “שנים אני מנסה לשבת עם ראש העיר ולספר לו על העבודה שלנו אך זה לא יצא לפועל”, אומרת אברהם. “יש לנו פגישות עם אנשים בעירייה ממחלקת שיקום ומאגף הנוער, והם יודעים שאנחנו פועלות למען ילדים עם צרכים מיוחדים אך לא ממש אכפת להם. אנחנו מקבלות מהם עשרת אלפים שקלים, אבל למה זה מספיק? הם לא מבינים שאם משקיעים בילדים האלו עכשיו יהיה להם עתיד טוב, הם לא יהיו נטל על איש. אבל היום איש לא משקיע בהם”.

“אנשים בעירייה או גורמי מקצוע לא רואים את הפוטנציאל, לא מבינים שאנחנו הצעד הבא. אבל אנחנו ממשיכות לבדנו”, אומרת אברהם. “אם לא נמצא מקום גדול מספיק או כסף לשכירות למקומות שכרגע אין ביכולתנו לממן ולהתאים לצרכינו, נאלץ לקצר את הקייטנה. אבל זו לא הכוונה”, היא מוסיפה. “אנחנו כאן לספק מסגרת לילדים, מסגרת שתתאים לצרכיהם ותעניק להם את הכיף שכל ילד עושה בחופש הגדול”.

מעיריית ירושלים נמסר: “עיריית ירושלים מאשרת הקצבות על-פי קריטריונים מקצועיים, והעמותה קיבלה הקצבה בסכום של עשרת אלפים שקלים. לעירייה הגיעה רק לאחרונה בקשה מעומתת ‘שיתוף’ להקצאת מקום לפעילותם, והבקשה תיבחן בהתאם לקריטריונים ולנוהל ההקצאות”.

לפניות לכתבת דנה ווילר פולק: danawp@walla.co.il

A homeless NGO: When inspiration doesn’t mean success

Author: Beth Steinberg

This post was originally featured on the Times of Israel on May 5th, 2015

There’s a strange disconnect between inspiring people, doing what everyone says is ‘amazing work,’ and actually succeeding in keeping it going. I guess that’s the nature of founding an NGO,Shutaf Inclusion Programs, something that I did with my colleague and co-founder, Miriam Avraham, in 2007.

Pesach-Camp-2015-AviyahEight years later, we’re proud of our innovative work in the field of inclusive informal education, as well as having grown from a grassroots initiative to a project that offers excellent and professional programs to more than 150 children and young people, with and without disabilities, year-round.

This past Yom Ha’atzmaut, 2015, I was honored to be listed as one of 67 Inspiring Women in Israel by Jewish feminist and author Elana Sztokman. Fantastic, right?

I’m tickled. Miriam and I, along with Shutaf’s dedicated staff, have worked hard. Our Shutaf board was delighted. Of course, we shared the good news via email and social media.

So, what’s the problem? We have no home for summer camp. We have no home. Period.

And I’m running out of inspiring and amazing ideas.

August summer camp, one of our banner programs, offers 3-fantastic weeks for 100 participants. That’s real respite for working parents, at a quality, inclusive-educational program based on the values of American Jewish camping.

When the program was young, we were smaller – finding rental spaces was easier. We expanded because of need, especially in August.

School buildings? They paint and renovate in late August. Not one has said yes.

Community centers? They’re either too small, or too disinterested in what we do to respond to our phone calls and emails.

Green spaces? It’s Jerusalem. There are so few workable locations that are appropriate to our mix of children with varied issues, both physical and developmental. And it’s August. We need shady areas as well as rooms indoor that are air-conditioned.

And you can just forget about accessibility.

I’m thinking of holding camp at Safra Square, the wide-open space at the Jerusalem Municipality downtown. It’s spacious, if a bit too sunny in August. There are bathrooms in the nearby buildings but they won’t like the kids running in and out. It’s not enclosed safely, which means our staff will be spending most of their time chasing after the kids who like to –and need to — run. We will certainly make too much noise but maybe that will make the mayor finally pay attention to the population Shutaf serves, with little help from the city.

We’ve called and written to so many local advocates. Times are tough. The government has only just formed a coalition. The municipality doesn’t know how to categorize us. We’re not a youth movement. We mix participants with a variety of diagnoses. We’ve never applied for municipal tenders – who can meet the criteria anyway?

Who is really thinking about the needs of a small and scrappy NGO that just wants to make August a bit easier for a bunch of children with disabilities? Nobody.

Last fall, we delayed opening our afterschool program because we were homeless after a rough war-torn summer where we hosted camp in a facility which while accessible, proved unwelcoming over a 3-week camp session. Shell-shocked, we looked carefully for a new partner. While we ultimately found a place of welcome, we’ve struggled, as we have every year, with being the ‘renter,’ often shunted to the side as needed.

A visiting foundation representative asked me why we haven’t held a capital campaign in order to fund building or renovating something. I asked him if that would be proper financial stewardship of an organization that still only receives less than 3% of its yearly operating funds from government or municipal sources. An organization that while successful, is far from financially sustainable, even though we’ve managed to grow and find the funds, most of the time, to serve our community of children and young people with disabilities.

There’s so much we could be doing as an innovative and exciting NGO, to truly inspire the community to include, to see difference as less fearful and worrisome than it currently does, if I didn’t have to, along with Miriam and our staff, spend endless hours making phone calls, canvassing neighborhoods for potential buildings, knocking on doors, writing emails and generally wringing our hands.

We hope we’ll find an answer.

The Four Children. Welcoming All Children to the Seder.

By Beth steinberg.
This blog was originally posted on the Times of Israel, on April 2nd, 2015. 

Each year, as we read the parable of the four children, I think about all those other children not mentioned in this historically, simplified description of human behavior.

“One who is wise or thoughtful.
One who is wicked or rebellious.
One who is simple or innocent.
One who does not know how to ask.”
Adapted from A Night to Remember, by Mishael Zion and Noam Zion

The Seder’s Four Children ask us to consider what is wisdom, rebelliousness, simplicity or, even being unable to ask? Emotions and questions that would seem to relate to the average child’s experience of learning and growing, of being and becoming a worthy individual.

The cousins. March, 2015

The cousins. March, 2015

Children. What do we want for them? So much. Make the right choices. Give the right answers. Live up to expectation. Make of yourself something that society values. Excel and shine, learn to be caring human beings, exemplify the wise and thoughtful child of the Four Children. Who would want different?

How do we react when they behave badly? Not well. You’re the evil child.

Get an A? You’re the wise child.

Seem sort of off? The innocent child.

More off? The child who lacks communication, who doesn’t even know how to ask. For so many things.

Becoming, of course, doesn’t happen in an instant. It takes time, along with fostering a range of necessary life experiences for each individual – part of their development and maturation process. Their actions and choices may vacillate, be they wise and unwise. Their big questions may be answered or left unresolved, their personal balance lost or found, their lives opened or kept closed to personal growth. As for their siblings and family members – they’re either carried along with them on their path to adult enlightenment or left behind in the dust of self-discovery. We parents can only leave the door wide open and hope that they will return to ask and discuss those ever so important four questions at the Seder.

While we now have many Haggadic variations on the four children – ones that do consider a different take on the traditional view of childhood and development – the tale of these four children can still be a moment of sadness for those with disabilities (and those who love them) at a Seder, or, of feeling marginalized because these descriptions don’t match their childhood (and parenting) challenges and experiences.

For this year, 5775, I offer up this take on the four children, recognizing that there will always be children who fly under the radar of general acceptance and love.

The one who is wise to people’s feelings, who senses happiness and sadness.
The one who struggles to understand and control their impulses and behavior.
The one who is innocent of unkind thoughts, who greets the world with pleasure and happiness.
The one who wishes to be welcomed and spoken to in public, while lacking traditional forms of communication.

Pesach Sameach.

 

My Perfect Internship

11053271_10152737475253441_5953663643612746229_oAs a recent college graduate, it’s a pretty standard thing to do an internship. A lot of people my age do internships to get experiences in various different fields that they are interested in possibly working in one day. It’s really not a rare thing.

What is rare, however, is to find the perfect internship. And let me tell you- I can say, without hesitation, that my internship experience with Shutaf could not have been more perfect. From the work I was doing to the people I was working with, everything was simply awesome.

Here are my top 5 reasons why Shutaf was such a perfect internship:

1) The staff at Shutaf is top-notch. I had the experience of getting to work with some really inspiring people, who all have such a passion and dedication to the work that they do day in and day out. I remember coming to the first staff meeting on a Tuesday morning and being a bit nervous. How do I suddenly incorporate myself into this organization that is already running so smoothly without me? My fears were relieved from the very minute the meeting started, as everyone on the staff was so welcoming and eager to hear my opinions on various topics.

2) My big project at Shutaf was so much fun and so rewarding! I had the chance to coordinate, for the first time, a team of runners to run in the Jerusalem Marathon in support of a more inclusive Jerusalem. It was a big task, but I was excited for the challenge! I’ve often heard friends complain that at their internships they weren’t given substantial, long-term projects. This certainly wasn’t the case for me!

3) Flexibility. As someone traveling in a new country, participating on a Masa program, and dealing with lots of constant schedule changes, flexibility was crucial. And at Shutaf, I found from the start that the staff was, thankfully, so flexible. I worked most directly with Elizabeth, the Director of Outreach and Education, and she always available by phone, email, text message, you name it! If I had a work conflict, she helped me figure it out. If I needed to come to the office a bit late she happily said “no problem” with a smile.

4) The kids and teens and Shutaf are simply awesome. I’m really going to miss seeing their faces every Thursday (and sometimes Tuesday) afternoon. Even with my limited Hebrew, they were eager to engage in conversation, learn more about me, tell me about their weekend adventures. They’re really just a great group of kids, each with such unique personalities. So full of life, so enthusiastic and willing to try new things, even things that may be scary and difficult at first.

5) Shutaf, as an organization, has the power to change the world, and I really do mean that. As I’ve said so many times to so many different people, Shutaf is a model of inclusion for the entire world. Read about Shutaf, visit the program, hear from volunteers, listen to personal stories and you’ll be amazed at just how flawlessly Shutaf works. I’ve learned so much from Shutaf and now’s the time for me to pass it on.

Written by, Rebecca Cushman, who interned with Shutaf from October, 2014-March, 2015. She was originally a participant in the “Real Life Israel,” Masa affiliated program.

Elections Should Be Equal!

Israeli law allows every citizen 18 and up, the right to vote in government elections. A key element regarding elections is that they should be equal.

This is a fundamental constitutional right, given to every Israeli citizen without reservation. A right that of course, is also offered to citizens who have disabilities: physical, intellectual, emotional, sensory, and communicative.  According to recent estimates, individuals with disabilities comprise at least 10% of the Israeli population.

Ensuring the right-to-vote of people with disabilities is an expression of relating to each and every person as an equal member of society. Voting is a basic civil right – the privilege of every individual to make decisions regarding his or her life and future.

This right, given to all citizens, needs to be reinforced as it relates to people with disabilities. All too often, it is the people in charge of those with disabilities who decide what’s “good for them,” and disregard the opinions of those with disabilities. Therefore, it is very important to ensure the rights of people with disabilities to make decisions regarding every aspect of their their own lives: elections, the workplace and the community in which they live.

In order to give people with disabilities a chance to take part in the elections, the law recognizes the need to make the elections accessible for people with disabilities. Amendments of the past decade have stated that voting stations must be accessible to people with disabilities, as well as be placed in hospitals and institutional settings that serve people with disabilities.

The law also states that a person who may have difficulties working through the voting process has the right to enter the voting booth with an aide of his choice in order to assist him or her with the voting process. There is, of course, the risk that this right-to-an-aide will be taken advantage of by those with specific interests. Therefore, the law states that one aide can not escort more than two people, and it cannot be the person’s boss or anyone who has some sort of authority over the person with disabilities.

In order to ensure the right-to-vote of people with disabilities, “Bizchut” will work further on behalf of those who have cognitive and hearing disabilities so they have improved access to this right. It is very important to inform people with disabilities about their right to vote and about the voting process.

The duty regarding subtitles and sign language for people with hearing loss election spots must be enforced and make sure no one abuses or deceives people with disabilities in the electoral process.

Attorney Sharon Primor , Legal Advisor for Bizchut – Human Rights Center for People with Disabilities

החוק בישראל מתיר לכל אזרח מעל גיל 18 את הזכות להצביע בבחירות לכנסת. עקרון יסוד בבחירות הוא שהן שוות וכלליות.

מדובר בזכות יסוד חוקתית ואזרחית, הנתונה בישראל לכל אזרח – ללא סייג. בתוך כך היא נתונה, כמובן, לאזרחים שהם אנשים עם מוגבלות: פיזית, שכלית, נפשית, חושית ותקשורתית, שעל פי הערכות מקובלות מהווים לפחות 10% מאוכלוסיית ישראל.

הקפדה על זכותם של אנשים עם מוגבלות בהקשר הבחירות, היא ביטוי להתייחסות אל כל אחד מהם כאל אדם שווה זכויות בחברה. הצבעה בבחירות, היא פעולה אזרחית יסודית, המבטאת את כוחו של הפרט לעצב את חייו ואת עתידו. זכות זו, הנתונה לכולנו, מחייבת הקפדה יתרה ביחס לאנשים עם מוגבלות. דווקא משום הנטייה הרווחת של מקבלי החלטות לקבוע מה “טוב” עבורם, בעבורם ומשום הנטייה להדירם. דווקא משום כך יש להקפיד במיוחד על זכותם לקבל החלטות לגבי חייהם, על זכותם להשתלב בקהילה וליטול חלק בכל היבטי החיים: החל מבחירות, עבור בשוק התעסוקה וכלה באופי ומיקום מסגרות הדיור בהן הם חיים.

על מנת לאפשר לאנשים עם מוגבלות ליטול חלק של ממש בתהליך הבחירות, הכיר המחוקק בצורך לקיים הליכי בחירות מונגשים לאנשים עם מוגבלות. כך למשל נקבע בתיקוני חוק מן העשור האחרון (בחוק הבחירות לכנסת [נוסח משולב], תשכ”ט-1969) כי יש להציב קלפיות מונגשות לאנשים עם מוגבלות בניידות; וכן שיש להעמיד לרשות אנשים המאושפזים בבתי חולים, ואנשים עם מוגבלות בניידות החיים במוסדות, קלפיות במוסד.

החוק גם קובע כי אדם עם מוגבלות שמתקשה בביצוע הפעולות המעשיות של ההצבעה, רשאי להיכנס לקלפי, מאחורי הפרגוד, עם מלווה מטעמו על מנת שזה יסייע לו בהצבעתו.

המחוקק היה ער, כמובן, לחשש כי זכות ההצבעה של אדם עם מוגבלות תנוצל לרעה על ידי גופים אינטרסנטים, ולכן נקבע כי אסור שאותו מלווה ילווה יותר משני אנשים (על מנת למנוע “הסעות מפלגתיות מרוכזות”), וכן כי אסור שיהיה מנהל או עובד המוסד, שעשוי להטיל מרותו על האדם.

על מנת להבטיח את זכותם של אנשים עם מוגבלות לבחור, בהתאם ליכולתם ועל פי רצונם, עמדת “בזכות- המרכז לזכויות אדם של אנשים עם מוגבלויות” היא כי יש להרחיב את חובת ההנגשה של הליך ההצבעה גם לאנשים עם מוגבלות חושיות, כגון לקות שמיעה, ועם מוגבלות קוגניטיביות.

כך למשל, רצוי לקבוע כי על המדינה ליידע אנשים עם מוגבלות שכלית ונפשית לגבי זכותם לבחור ולגבי פרוצדורת הליך הבחירות (למשל, דפי הסבר ברורים ופשוטים); יש לאכוף את החובה הנוגעת לכתוביות ושפת סימנים לאנשים כבדי שמיעה בתשדירי הבחירות; ולחקור באופן תקיף חששות לניצול לרעה ולהטעייה של אנשים עם מוגבלות בהליך הבחירות.

 עו”ד שרון פרימור, היועצת המשפטית של ארגון בזכות – המרכז לזכויות אדם של אנשים עם מוגבלויות

Shutaf: The Best Place To Be

In one room, four pre-teen girls closely followed the complicated sequence of Zumba steps their teacher, Lisa, was doing in time to the music.  In an adjacent room, a small group of children, aged 6-13, sat in a circle petting a variety of animals brought in by Aryeh, a staffer from Jerusalem’s Nature Museum who has worked at Shutaf for many years.  One boy finally worked up the courage to pet a rooster (more than I could do); another stoked the soft fur of a white a rabbit; and others carefully held guinea pigs, and other tame animals.  Downstairs in the gym, under the supervision of a gym teacher, two teams were engaged in a spirited obstacle course-type relay race involving running, balancing on a beam, and aiming a basketball into a net.  A preteen unable to run due to a back injury, participated by serving as the timekeeper with her Smartphone.  But, winning or losing didn’t really seem to matter; it was all about being in the best place to be for having fun, socializing, cooperating, and getting exercise.

Marci, the Program Director of Shutaf’s informal, inclusive education program had been giving me a tour of the inclusive afterschool activities held two afternoons a week at the Jerusalem YMCA.  It was important for me to see and appreciate first-hand one of the Shutaf programs in action.

Arranged by Skilled Volunteers for Israel, I was a volunteer from the U.S. for a month. Thus far, I had been spending my time working at the Shutaf office alongside Beth and Miriam, the organization’s founders; Marci and Yoni, a staff professional), with Elizabeth, the Director of Outreach and Education, and Rebecca, another volunteer from the U.S.

Meeting four days a week at the office, we collaborated on key issues: program planning, grant writing, and program assessment.  We clarified ideas about each program’s goals and objectives (for the after school program at the YMCA), camp programs (the week before Passover and for three weeks in the summer), and the different units specially designed for the teens.  For example, we documented what had occurred during a teen unit on going to a restaurant, and another on sex education.  We listed the ways in which these units resulted in a positive impact on the teen participants.  For the restaurant unit, we discussed how the teens succeeded in learning appropriate restaurant behavior, how to order, and what it meant to converse over a meal.  We worked on formulating and refining plans to share with current and future donors, to ensure that they would understand and financially support Shutaf’s many, valuable programs.

I have come to appreciate that no matter where you may be—at the YMCA, at camp, taking a field trip with the teens, or working at the office with extraordinary colleagues—Shutaf is the best place to be, not only for the program participants, but also for a volunteer.

Thank you, Shutaf!

Judith Zorfass, February 24, 2015

P.S. And the extra bonus for me was that it was the best place to be for the month of February—who cared about a Jerusalem snowstorm (we had much, much worse back home in Boston).

judyz (1)Dr. Judith Zorfass is currently a senior advisor to a project funded by the U.S. Department of Education, Office of Special Education Programs and a supervisor of special education student teachers for Lesley University.  From 1986-2014, she directed over 25 federally-funded projects at the nationally-recognized organization, Education Development Center. Her work focused specifically on literacy development, special education, and technology implementation. She has conducted research studies, developed curriculum, created software, designed and conducted online courses and webinars, designed websites, and carried out professional development. In addition to authoring the book, Helping Middle School Students Become Active Researchers, she has written book chapters and journal articles. She frequently presented at national conferences.  Dr. Zorfass received her doctorate in reading and language development from the Graduate School of Education at Harvard University.  She has been delighted to be visiting Israel from Boston for the month of February, volunteering at Shutaf in Jerusalem.

 

A Conversation with Yoni

Yoni Arya, is Shutaf’s Young Leadership Coordinator. 

What was your first connection to the field of disabilities?
I have ADHD, so growing up I was in a school where they didn’t know anything about what I was doing and they just tried to medicate me. Most people just pushed me to the side because I was being annoying and they didn’t know how to deal with me.

DSC_5489Who was the first person you remember encountering with special needs?
I remember there was a neighbor I had with severe psychological needs. I remember him being different and I was conscious of it. Everyone kind of laughed at it.

As someone who grew up with a younger sister with special needs, were there times that you felt your sister got all the attention?
No. In fact my sister was the easy one. I was the hard one! I never felt like she got all the attention. It’s hard for me not to be the center of attention!

Were there times you had to stand up for your sister?
My sister’s disability isn’t something you see so thankfully, we haven’t really bumped into people that were mean or making fun of her. We’re very protective of her but we haven’t had a need to protect her.

What is your role as a sibling of an individual with special needs?
To provide as much normalcy as possible. As a sibling, I would treat her any way I would treat any other sibling.

What do you see your role being as your sister gets older?
As she gets older, I think I’ll be the one taking most of the responsibility, if it’s not my parents. As she gets older, hopefully she’ll have a community, but I’ll be her support system and she’ll be at my house for Shabbat.

Were other kids in school growing up conscious of the fact that you had a sibling with special needs?
I don’t hide it, but it’s not something that comes up unless someone asks me. I don’t feel like I need to tell people before they come over to my house, “Hey, my sister has special needs.” I don’t need to warn you about how she’s different.

What did you learn from your sister?
I think I learned most that people portray what they want you to see. People are very different with their family than how they are outside. I’m with my sister, Gabby, all the time, and I know she acts very differently at home than when she’s out with other people!

I am not afraid. Finding strength in difference.

Written by Shutaf co-founder, Beth Steinberg, this blog originally appeared in the Times of Israel on December 10th, 2014

Hi, I’m Beth. I’m mother to Akiva, who’s 17 and has disabilities.

I am not afraid.

My son’s challenges are significant but I’m not afraid.

I am unsure about the future. His happy adulthood, my happy years as an older adult. What are his rights, what do I deserve, what will be the responsibilities his older brothers will shoulder? Will he be happy?HappyPic

I worry he might not be happy. But he’s almost always happy. That makes me less afraid.

When I write about Akiva – his needs, his challenges, my challenges – I choose my words carefully but I am not afraid. Except for when I hit ‘publish.’

When I talk about our journey as a family – the tough moments, the tearful moments, the moments that I just wish it were different – I try to be honest. I know honesty is important. I know many people pity us, pity him, don’t truly understand what it means to be his parent, his full-time advocate, his person, his people, his caring community. We’re the people who help him shower and dress, who care for him when he is sick, who sing songs with him. We’re the people who love him. Sometimes, I wish it were different but I am not afraid.

When I post a picture of Akiva, I choose the happy ones, the ones where his cute, uneven teeth, his often crossed-eyes, his sometimes grubby face, are softened by the happy smile on his face. He’s kinda funny-looking but aren’t we all?

I am not afraid to show the face of disability – his disabilities that is – via my son. I am not taking advantage of his well-being. I am letting the world know that disability is happy, disability is every emotion and more. Just like not having a disability is so many things and so many emotions and so many experiences.

I am not afraid of exposing us, of sharing him. While I know he’s unaware of this exposure, I know that showing him to the world, my extended world, will help ease fears and misconceptions about disability. I hope.

Akiva on his way to a party

Akiva on his way to a party

But I am afraid of a world that treasures beauty. Where skinny bodies and 6-pack abs, along with being blonde and gorgeous, is regurgitated on television and in movies. There are few positive images shown of real people who look different, as opposed to actors playing a part.

I’m afraid of a Jewish world that treasures learning. Where how many degrees and how much you earn, gets more respect than your dedication to being a good person, an inclusive person, a person who believes that we were all created in G-d’s many images.

I’m afraid for other parents of children, teens and adults with disabilities. Those who feel unsure that the world will appreciate their loved ones. That the world will look kindly on their stories. Their tales of difference and challenge, of unusual beauty lost and found.

I’m afraid of a world that divides people up according to who can and who can’t. A world that divides those with disabilities according to who’s got this and who’s got that. A world that decides who’s high-functioning – whatever that really means – and who’s not. A world that sentences you and judges you for your difference without knowing what that really means.

So, I work past the fears. I tell his story. I tell our story. I invite you in, to read, listen and comment, so that you can understand and appreciate. So you can smile at the different-looking-behaving-whatever person the next time you see them on the street and be glad that they’re a member of your community. Because their people, those who love them, need you to try to be less afraid.

“And a rock feels no pain. And an island never cries.” Paul Simon

 

International Day of People with Disability

Did you know? December 3rd is International Day of People with Disability (IDPwD), developed in Australia and recognized by the United Nations, celebrating progress in breaking down barriers, opening doors, and creating an inclusive society for all.

It’s the end-of-year, yup, that time of year that Shutaf Inclusion Programs asks for help from our friends and friends of friend. Help us continue to provide excellent and inclusive programs for more than 150 kids and teens in Jerusalem. Read Talia’s story here and Donate Now!

And for a bit more to read, some of my thoughts on gratitude, based on a piece that celebrates the joyful mess of life somewhat rethought from my particular perspective as parent of a teen with a disability.

Gratitude. Sure we’re grateful. That is, when we do remember to acknowledge and give thanks that we have a home, clothing, food to eat and people we love in our lives. Other times we feel cranky!

Ira, Akiva, and Beth at the circus.

Ira, Akiva, and Beth at the circus.

This is for those of us, parents and caregivers, teachers, therapists and staffers who work work hard, really hard, to answer the needs of all of our children, especially those with disabilities. We are grateful, even if we’re at times tired and in need of an extra hug.

I am grateful for…

  1. Early wakeups = children with sensory issues who defy sleep. Maybe this time we can snuggle together and I’ll close my eyes until 6AM.
  2. House to clean = because my kid had a crazy meltdown in the bathroom. But while I cleaned it up, I reflected on how hard it must have been for him/her at that moment.
  3. Laundry = thankfully, I have a dryer.
  4. Dirty dishes = because we had a fresh meal, even if he/she didn’t eat the stew because it was just too scary.
  5. Crumbs under the table = isn’t it time to get a dog so that this isn’t a problem?
  6. Toilets to clean = see #2.
  7. Lots of noise = and the ability to handle sensory input as well as find a quiet place for my special person to get away from it all.
  8. Endless questions = I’d be grateful to have a person who has the ability to ask endless questions…I miss that. For those who have inquiring children, consider what it’s like when they don’t speak that much.
  9. Getting into bed sore and tired = I’m still alive! And hopefully will be able to get up again in the morning.

By Beth Steinberg, co-founder, Shutaf.

Inspired by Chelsea Lee Smith. MomentsADay.com

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!