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 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?

The Best Part?

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_182637Interning at Shutaf includes getting to work with many great people at an awesome organization. It’s also offered a combination of experiences, in particular, unpredictability and being flexible. Prior to starting at Shutaf I thought I’d be working on social media but have to come to realize my role is much more diverse than that. Every day you have no definitive idea of what will be asked of you or what you’ll be doing. This is not a bad thing in my opinion because it means you can look forward to every day being a new adventure. You can never get bored with repetition and at an environment such as summer camp being able to adapt is a good quality to have. Being flexible means getting to enjoy the short time you have with the kids that much more.

When I was told I would be going to camp, I figured I would just be on the sidelines, watching and observing. While I do end up doing that (my shyness always gets the best of me), I also get to interact with the kids – today, I got the opportunity to get involved with other activities. I made a  purse out of newspaper which was really fun, and I also had the opportunity to dance again.

The best part? Trying to improve my people skills. I am being forced to break out of my shell and talk to people. The language barrier makes it a little difficult but it is still really fun.

Even more so, I get to experience in a small way, what it is like having a disability in day-to-day activities. Not being able to join in an activity, or feeling left out of something, are experiences that everyone feels at some point but for people with disabilities, they face that exclusion every day. I know I’ll never be able to truly understand the struggle but being at Camp Shutaf is helping me learn. The unpredictability and flexibility required is all a part of this process. Even though I don’t know exactly what I’ll be doing tomorrow, I’m still excited!

One Week Down…

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_182637This week was absolutely fantastic! I got to pick up some new Hebrew words, make new friends and just have fun again. I recently graduated from university and am very stressed but working at Shutaf is a nice relief. Being someone one of the interns means I still have some responsibility which is nice, but I can still enjoy myself. Helping out when needed and getting to experience new things was very satisfying. I’m almost tears right now just thinking about how in a few weeks it’ll all be over but I’m also very thankful for this experience so far. Without even realizing it, Shutaf now has a special place in my heart and that thought just makes me really happy.

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.