Do you even like your job?

by: Yoni Arya, Assistant Director of Programming

img_5049Camp Shutaf, part of Shutaf Inclusion Programs, offers 3 weeks of camp for 130 campers, teens and young adult participants from the greater Jerusalem area. More than 50% of Shutaf families pay significantly reduced tuition for the program which includes busing to and from camp. Shutaf believes that every family should have access to quality summer programs regardless of their financial situation, and without the family having to jump through hoops in order to  prove that they need financial aid for camp.

I have had the absolute pleasure of working for Shutaf for the last three years, now going on four, and everyday I find something new that I love about job.

The best part of my job at Shutaf is our focus on  answering difficult needs, especially during  summertime, Which can be the most difficult time of the year for children with special needs and their families. Choices for activities are limited, and most of them end up putting families into debt.

I am so proud that Shutaf is a reliable, professional and affordable answer for so many children and  families.

Let me tell you more with a story from a pre-camp home visit. I knocked on the door, Emotionally  prepared (or so I thought) for meeting a mom and her two boys. A ten year old boy, “Moshe”, answered. “Moshe” is super polite, and very sweet – you can tell he is very excited to see me. I sit down with his mother ‘Sara’, and his brother ‘David’, who is thirteen and a Half (a very important point to David), and their older sister who is an IDF soldier.

‘Sara’ begins by telling me that she will only be sending ‘David’ to camp as she is not familiar with Shutaf programs, and only feels comfortable sending her older son. From the way she is speaking, and by informally  assessing  their extremely modest home, I can tell that there is a lot more going on here then she is comfortable sharing with me.

I tell her about camp and the  different activities we offer, and watch as both  boys get excited. We discuss tuition, and I can also see the look on Sara’s face as she wonders how she is going to pay for two children to go to camp for two weeks. Next,my favorite part of the home visit, getting to know the kids. I find out that David  loves to sing and apparently is very good at it. He also loves soccer, carpentry and swimming. “Moshe” is an energetic boy who also loves sports, swimming and playing with friends. The family, thinking I wouldn’t take a problem child, told me that the children don’t really have behavioral issues.  This seemed a little odd to me and the sister had made a couple comments to the contrary. I filled in the children’s information and told Sara to be in touch with our Director, Marci Tirschwell to discuss price (which she brought up numerous times during this home visit).

I wanted a little more information on these children as I felt i didn’t get to see the full picture. After getting permission from the mother I got in contact with the school social worker who handed me over to David’s teacher.  My expectation of this call was that the teacher would tell me that the boys have some behavioral issues but it is a manageable situation. Boy was I wrong. The teacher proceeded to tell me that not only do the boys have some behavioural issues but the financial situation was worst than I thought. She told me that Sara is a very caring mother and tries her hardest but can only send a very plain sandwich for lunch and the school provides clothing for the children.  Sara can’t even pay the 3$ that goes towards the classroom fund. ON top of all this she had to have surgery on her leg so she is not able to work.

We decided, as is our policy, to contact the city social worker and double check the financial situation and see if the social services department would help this family pay for camp. I tried to contact the social worker several times but only once got a hold of a different social worker that told me she would ask  the families social worker to contact me. She hasn’t yet. Meanwhile our counselors get in contact with our families the week before camp in order to update them on relevant information for camp. I was told by one of the counselors that they called the “Cohen” family and were told that the children are not signed up for camp.

Finding this very odd I phoned Sara. Sara told me the children weren’t interested in camp anymore. To try and feel out what the issue was I asked if they would like to come to camp for a week. As Sara is discussing this with David I hear one of the most heartbreaking sentences come out of David’s mouth. “Mom if it’s too much money I don’t want to go”. What is happening in our country when a thirteen year old is willing to pass an amazing summer experience because his Mom can’t afford it?

I immediately told her that I would call her back in a few minutes. I called up Marci and explained the situation. Her immediate response “make it happen”. I am extremely proud to work in an organization that gave me the opportunity to allow this family to come to camp no questions asked. These two children are coming to camp. The mother payed the lowest tuition that I believe we ever offered and this family deserves that. Some of my fondest memories are of camp I don’t think any child should be deprived of that.

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.”

 

A Day to Explore

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!

IMG_20150731_182637When I got to Camp Shutaf, I was told I had the option of joining a group of young campers or going on a scavenger hunt with the teen camper. I was a little hesitant to leave the camp location but thought a day out exploring would be fun. I’m very glad I made the decision I did, as I got the opportunity to see various sections of the municipality and learn about the history of the area. I got to see the Old City, and in particular the Armenian Quarter which I’ve never seen –  I was really excited and impressed. Thankfully, I was put in a group where the counselors spoke very good English. One of them even gave me a little history lesson about the Armenian quarter which I really enjoyed. Learning about the rich history of Jerusalem and the Old City would’ve been enough but I also got to relax in the shade while eating lunch and a popsicle.

Today was a very different day to my previous experiences at Camp Shutaf but I thoroughly enjoyed myself. I wasn’t running around as much and wasn’t able to communicate as much with crazy actions during activities but I was still so pleased with how the day turned out. Now I don’t know what to do. Do I stay with little campers or do I mature up and go with the teens?

My First Day with a Group!

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!

IMG_20150731_182637Today was a very fun and different kind of day because it was my first whole day with the same group. The ages of the kids are around 8-9 years of age and were full of so much energy. It felt nice to finally have a specific group to be with because it allowed me to bond more with those kids and the counselors. I also got the opportunity to experience a broad range of activities with the same group which made it possible to see the different sides of the kids.

There a few extra special moments today one of which was when one of the kids leaned on me and held my hand while we were in a session with animals. I always heard that children have the best intuition and judgement of character and for a child who doesn’t even know me to trust me like that was very heartwarming. Throughout the day kids were asking me for help and coming up to me which was also a great feeling.  Another fun activity with the kids was when we got to play outside with bubbles. We were playing together and I got to take some awesome pictures. Seeing the smiles on the children was very satisfying. To have children respect me but also enjoy my company without us even really speaking to each other is simply another heartwarming moment.

Campers and counselors alike were engaging in conversation with me and I think it was then that I started feeling really good about the day. Getting to know a few of the counselors was also really great because it allowed me the opportunity to bond with people around my age and I also got to learn a little about life in Israel and at Shutaf. Making new friends is sometimes difficult for me but being with this group at Shutaf was pretty fantastic. Once again there was the obvious language barrier but when you are around certain individuals for a certain amount of time you start to build a great relationship!

First Day Impressions

IMG_20150731_182637Today is my first day of camp. I have the same feelings I did when I was a little kid going off to camp at the beginning of the summer. It’s only been about twenty minutes since I have been here, and I already feel overwhelmed. Not the run-for-the-hills kind of overwhelmed but the kind where you are very excited and nervous for what’s to come. One of the groups I spent time with was with was singing “Hakuna Matata,” and even though they were singing in Hebrew I found myself singing along (in my head in English). For me, being around and hearing something foreign and yet so familiar, like that well-known song, was very comforting. Watching all the kids energetically bounce around reminds me of when I went to camp. That made me so happy because once again I felt as though I could relate even though I could not understand anything that was being said.

What was even more comforting was just how friendly everyone was. Almost half of the staff and campers speak some level of English but even those that couldn’t, still made an effort to come over and make me feel welcomed. I am a very shy person when it comes to meeting people, as well as being in large groups but the friendly atmosphere helped me get through it.

The best part of my day was being in one these blow up plastic balls called “Zorbs”. At first it was just me and the other interns but after a few minutes all these campers came rushing in. They just started pushing me around, and then the staff joined in and it was really fun interacting with everyone in such a friendly manner.

Overall I had a really good day. I was internally freaking out most of the day trying to find my place and see where I fit in within the camp. I think after a few days I will start to feel more comfortable, and really get to enjoy Camp Shutaf for what it is – a really fun and inclusive environment. Within one day, I already feel like a changed person. and I can’t wait to see what the rest of these three weeks will hold!

Stephanie Reynolds is currently a summer intern at Shutaf. A Toronto native, she is in Israel on the ‘Real Life Israel,’ summer program.

“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. 

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

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.

 

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