Valuing Differences. Guest Blog by: Jenn Smith

Jenn interned at Shutaf during 2013-2014 academic year.  Originally from LA, she lived in Jerusalem while studying in Hebrew University’s Non-Profit Management and Leadership MA program.  Thank you, Jenn!

Jennifer SmithPrior to my first visit to Shutaf’s afterschool program I was warned that most of the kids would speak little to no English, however with two months of ulpan under my belt, I was confident that I would be able to communicate with at least some of them. Boy was I wrong! When I arrived at the program, the kids were all very warm and welcoming, but once they started talking, I seemed to have forgotten all of the Hebrew that I had learned! A young girl immediately approached me to investigate who I was and what I was doing at Shutaf. A staff member not only had to translate for me, but also respond on my behalf. I was not as fortunate other times that afternoon and often found myself frantically searching for help when a child attempted to communicate with me. I was dependent entirely on the English-speaking staff. Not being able to communicate with the kids made me feel useless and completely isolated from the very people I was there to interact with.

As the afternoon progressed, many of the kids seemed to pick up on my limitation or special need, if you will. One boy took my hand and brought me over to where lunch was being served and merely pointed to the items that he wanted and required my help getting. Another girl, who insisted that we work on her art piece together, simply communicated by passing me a crayon and pointing at her drawing. I knew I correctly interpreted her actions when a huge grin spread across her face after I began adding a little jewelry to the ladies in her drawing! She clearly had not yet learned that every woman is in need of a little bling and I was happy to share such an important life lesson with her! After our artwork was complete, another group of kids gestured for me to join them on the floor for a card game that I was unfamiliar with. They demonstrated first how to play and then handed me the cards so that I could have a turn. They were patient when I didn’t catch on to some of the rules immediately and persistent in trying to find alternative ways to explain something when I didn’t understand their hand mimes the first time. Similar instances occurred throughout the remainder of the afternoon and, by the end of the program, I was baffled as to where the time went!

I had never thought of myself as being a person who has a disability, but reflecting back on my first visit to Shutaf, I now see that I was. Yes, it was only temporary and, in the realm of disabilities, doesn’t even begin to compare, but it did give me a quick glimpse into what many of these kids experience on a daily basis and may continue to throughout their lives. The initial feelings of isolation, exclusion, frustration, and purposelessness that endured when I arrived at Shutaf are typical for a person who has a disability. Although adjusting to this new environment and impairment of mine was difficult and uncomfortable at first, having the kids at Shutaf accept and include me despite my differences, made a huge impact and had me leaving with a sense of purpose. This outcome, I believe, can be attributed to the amazing, inclusive environment that the Shutaf staff has cultivated.

Above all else, Shutaf has taught me to value people’s differences by understanding that everyone has something worth contributing. I was lucky enough to be in an environment with kids who are thoughtful, tolerant, kind, and patient, and also embrace this very notion. Unfortunately, this is not always the case. It is important to remember that although you may not know now what it feels like to be a person who has a disability, likely, at some point in your life, you will (World Health Organization). Keep this in mind before you decide to brush off someone who might be a little bit different from you, or even before you choose to park on the sidewalk, making it virtually impossible for someone in a wheelchair to get somewhere they need to be, instead of spending the extra ten minutes it takes to find a parking spot, or before you opt to not make your business, classroom, program, or whatever else, accessible for everyone because it requires a little extra work on your end or might cost a bit more.

A huge thank you to all of the Shutaf staff and Shutaf participants for the invaluable lessons you have taught me over the last year! I will be sure to share those lessons and I hope you and everyone reading will do the same!

“The Embodiment” and “Gratitude” – Guest Post by Dana Robbins

This post originally appeared in The Examined Life Journal, University of Iowa Carver College of Medicine, April 2014.

After graduating from Wellesley College, Dana Robbins received a J.D from Columbia University and practiced law for 28 years. Upon retirement, she entered the USM Stonecoast Writers program from which she received an MFA. Dana had a stroke at the age of 23 and often writes about healing.  Her poetry and essays have appeared or are forthcoming in a number of journals and publications, including Drunken Boat, Jewish Women’s Literary Annual, and The Examined Life of the University of Iowa Carver College School of Medicine. She has won several awards including an honorary mention in the 2013 Fish Poetry Contest. 

Dana Robbins

Dana Robbins (right) and her mother

The Embodiment

It was not easy walking into a gym thirty years after the stroke that left my left side spastic and weak, when, well into my fifties, I resolved to tackle the excess weight that age and too much time in front of my computer has deposited around my middle and lower half. At first, I felt painfully self- conscious about the drag of my left leg and the awkward way my left arm pulls upward toward my shoulder. I was frustrated that some of the machines are impossible for me. Over time, I have learned not to compare myself to others and to focus on doing my personal best. Usually, I begin on the bicycle or the treadmill, then progress to the nautilus machines. At the end, I do a brief agility training that involves walking sideways and making boxes with my feet. I call it my dance. Sometimes I laugh when I catch sight of the middle-aged fluff ball who is doing these strange movements.

At the gym, there are the usual range of body types and people: the slim and toned, the painfully thin, the soft and round, the elderly and frail. And then there is the man with the missing limbs, both his legs amputated, bandaged, just above the knee. His limbs stick straight out from his wheelchair like upended bowling pins. I saw him yesterday as his aid placed him on the nautilus. I used my right hand to hoist my weak left leg into position on nearby equipment. As I did my leg extensions, my difficulty seemed minimal by comparison. I looked in his direction and the faintest hint of acknowledgement passed over his face. He has sparse white hair and a powerful torso. He is old but not ancient, maybe seventy. He looks like the kind of man who once wore a suit and headed up a business. His hands, resting on the bar, are balled up, fists without fingers.

I want to say something friendly but his face, scrunched with will power, says no admittance. A bolder person would get right in there and say hello, but I know all too well that kindness can carry a hidden undercurrent of pity, condescension, even dread. I remember how often people would tell me it could be worse, as I, twenty three and disabled for life, fuming thought, yes, I could be dead how much worse could it be. I painfully sensed that even the compliment “you are so brave,” really meant, “and I’m so glad I am not you,” How well I understood what they did not or could not conceal, that my broken body was the embodiment of their fear.

I got tired of healthy people telling me to make the best of it. Did they think I didn’t know that? I loathed the military metaphors; people telling me to be a fighter, to give my all to the battle. The problem is that this kind of thinking gives rise to shame, as if disability is laziness or weakness of the will, as if health is just a matter of trying harder, one more prize in our competitive society. This is why I cringe when I see the advertisements, where a person grinning or looking resolute, announces, “I beat cancer.” Some people will not “win.” Does this make them “losers”? It is bad enough to be ill or disabled, how much worse it is to be branded a “loser,” too. These metaphors obscure the essential truth that some circumstances just aren’t within our control.

In many ways healing is a process of coming to terms. The key word for me is acceptance. Acceptance does not mean liking it. Every day a part of me mourns that I cannot run, jump, swim or dance, that there is not a single craft I can manage, because knitting, crocheting, quilting require two hands. And I will be forever pissed off about it. I think that it is possible to accept an illness or disability without giving in to it. Spiritual acceptance can coexist with a healthy and motivating sense of indignation, even rage. Thus, I am not persuaded by the people who say things like “my illness was a gift.” I find myself thinking “are you kidding?”

Illness is not a battle or a sport, and healing is not a war, but a journey to a destination unknown As Susan Sontag says, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick” (Sontag Susan, Illness as Metaphor, p. 3). I know in my heart that this journey has changed me forever, leaving me with my own unique blend of wisdom, hope, and anger at the so called “normal” world.

I don’t know anything about my compatriot in the wheelchair but I salute his courage. I try to catch his eye to nod as I did the day before, but he is stone-faced. I wonder if he is protecting himself against the insensitivity of others. He stares grimly ahead and I must honor that. Perhaps tomorrow, I will be able to speak to him.

 

Gratitude

My weak leg cramped after seven hours in the airplane seat, I walk bedraggled
and haltingly, in the hallelujah moment of safe arrival as the kind steward helps
me off the plane; much younger than I, he pity-flirts with me, then urges me

to use a wheelchair. “I’d rather walk after sitting for so long,” I say, as I pass
through a gauntlet of a dozen wheelchairs lining the hallway with porters
standing by. “Do you need help, ma’am?” they chorus. I repeat my explanation,

remembering my slow pilgrimage through the stages of survival after the stroke:
how I began in the ICU, flat and immobile within a maze of life-giving tubes,
then moved to a bed, where I pulled myself up to sit by grasping the “monkey bars”

suspended above me, until I gained strength enough to be pushed in a wheelchair;
I trembled the first time, sensing prison between its aluminum rails, felt like an infant
on a potty as I use a commode chair and a shower contraption with a hole in the seat.

After months crawling across therapy mats like a penitent at Lourdes, my limp leg was
encased in a hip to ankle cage for the slow lurch between metal bars; next, a walker,
then a four pronged cane, then a standard cane, until finally, I walked unaided.

How would the people who offer help in the airport know that to me the apparatus
of disability has all the appeal of the electric chair?
As I limp past the stations of empty, waiting wheelchairs, my eyes fill as I picture

one that may someday again have my name on it. After the long passage through
customs and baggage, the cool air touches my face and, although it is midnight,
I am still on my feet.

The Learning Curve

Miriam and I really didn’t set out to start a  NPO that first summer, 2007, when we started Shutaf. Our learning curve over the past 5 years has been steep, especially considering that neither one of us came from the world of non profit management and business. Miriam is a graphic designer, now working as a CFO of a growing organization – okay, she does have expertise, along with her husband in the field of fundraising, specifically foundation grants. But me? I’m an entrepreneur – a whole foods caterer, would-be-writer, stay-at-home-homeschooling parent, theater director for teens and now adults. Not exactly an expert in the field of special needs.

I was thinking of this as I stood and chatted at a Shutaf family gathering at the Nature Museum in Jerusalem yesterday in the late afternoon. Over sweet slices of watermelon, pasta salad and Shutaf’s Program Director Deb’s famous chocolate chip cookies and yes, the obligatory pita and hummus, we caught up with each other and talked about the school year that just ended. One parent, Carmel, father of Nir, who’s now 16 or so, talked about the fantastic year that his son had – how he made strides in academic work as well as personally – how proud he is. I noted that we often forget that with kids who have developmental issues, growth and development are indeed delayed, meaning, that we need to be patient and wait for the changes, maturation and path to adulthood…when they come. That is, when the time is right for the young person. Learning curve – it’s different for each person, right?

I sat with another parent, Sharon, mother to Morane, about the same age. She was describing Morane’s busy schedule and her successes socially at her different programs – what a pleasure that is for her mother as well. Both Sharon and Carmel, talked across and over their kids as they flirted with each other in that sort of uncomfortable way that younger teens oven have with each other as they begin to examine and understand their sexuality – it was great to watch. That’s another learning curve to ford if you’re a parent to a child with special needs – for sure.

Yoni, who arrived with his mother, Sue, enjoyed chatting shyly with some of the younger kids who were there. Yoni, who’s a few years older, has been part of the Shutaf older teens program for a couple of years enjoying the sense of being needed and taking part. His mother has been thinking of what happens beyond 21 and if Shutaf will develop a new program – we’re working on an idea that would hopefully be run by another organization with our input. Miriam’s project – certainly a learning curve. Just the thought of 21 and aging out of school and after school programs is quite frankly frightening for most parents who year to find the right answer for the kids future’s.

Gabriella and her 2 girls, Avia and Ella, brought two local teens who run a youth movement program on Tuesdays, introducing the program to the other parents. We heard about Knafayim shel Crembo – another youth movement program that has arrived in Jerusalem from the center of the country this year. Nir’s had a great time there this year, assisting a girl in a wheelchair, who has significant motoric and developmental issues and who now smiles when she sees him arrive. What a great opportunity for this teen.

Tanya and her 3 boys ran around with Deb’s dog, Goula, just enjoying the cooler late afternoon temperatures. Tanya was curious – watch Shutaf’s newest movie featuring Tanya and her boys –  to hear more about the youth movement ideas and we talked about the school her eldest, Ami, is in this year – is it the right environment for him or not – it’s got a tough and competitive ethic that often seems at odds with his nature. Choosing the right programs – moving our kids when necessary? Always a learning curve. Never easy.

From all of us at Shutaf, we remind you to accept your learning curves, to be glad that we all have our path in lives that leads us to hopeful satisfaction within an accepting community of our choosing.