The Marci Method

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This post originally appeared here. 

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

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

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

For what? For having developmental delay?

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

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

IMG_0850Court:  “Kol Hakavod, Good job!” And, that’s when I saw red.

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

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

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

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

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

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

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

“Please just take him out of the room!”

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

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

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

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

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

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

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

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

Akiva BlogHow about these questions.

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

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

Akiva, what activities do you enjoy best of all?

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

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

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

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

He is Akiva.

 

Disability: It’s a Jewish Peoplehood Issue

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


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

-Barbara Kingsolver, ​The Poisonwood Bible

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Moments That Shape Us

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

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

Chanukah Party, 2014It’s my first day of camp, there’s an enormous circle of campers and counselors that forms. They break out in song and dance, those participating are absolutely bursting with joy. There are a few individuals uninterested in participating. I try coaxing them into joining in, without any luck… At our after-camp-staff meeting we discuss what we as counselors should expect from the campers during “ma’agal” (circle time.)

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

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

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

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

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

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

 


Our summer intern, Stephanie Reynolds, has been chronicling her daily experiences at Camp Shutaf. A recent college grad from Toronto, Stephanie has been having a blast experiencing camp and inclusion the Shutaf way. Enjoy!

Today I was wIMG_20150731_182637ith a group and what I observed was the level of diversity within Shutaf. Every activity I did represented an important part of culture from other countries and I thought that was really great. Israel is full of a diverse group of people and so to see that included in camp activities is awesome. We got to make sombreros and salsa for Mexico and we played a few other games. The kids even learned how to say “buenos dias”! I think it’s important to expose children to different cultures because that creates a level of understanding and appreciation. These concepts also create an understanding of what inclusion means because the campers will learn about how to get along and not judge or stereotype. Inclusion is a cornerstone of Shutaf philosophy and unlike many other organizations Shutaf really puts what they believe into practice.

The counselors never force a child to do something they don’t want to but rather let them be themselves. This allows for various types of personalities to blossom creating an even more diverse environment. Shutaf includes campers from all types of backgrounds and the mosaic of this is truly beautiful. I have really noticed the differences coming together. In a country such as Israel and a city such as Jerusalem it is easy to believe or perceive that a lot diversity doesn’t happen but I can say from experience that here at Shutaf diversity is very real.

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.

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

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