“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.

I want excellence. I want opportunities.

I’m the mother of a 17 1/2 year old girl with special needs. As I watch Adina’s peers without disabilities graduate from high school this month, going on to mechina or the army, my heart aches. What future awaits my daughter? She has another 3 years to go in the Israeli special education system. And then what?  Where are her Mechina programs, army options, college track?

vinnyAdina started out by being individually included in neighborhood preschools and elementary school until fourth grade, when she expressed that she was tired of always being “on the side”. We transferred her to special education – Tidhar – a wonderful school for children with severe learning disabilities, as well as emotional and behavioral issues in Jerusalem. She had three excellent years there. But since then, she hasn’t yet found a place that truly answers her emotional needs.

And yet, the bigger question is what happens after the school years? Adina loves to work with babies, horses and dogs – she’s a good worker. Where is the vocational school that will train her to do these jobs, truly believing her capable of hard work and giving her the emotional support she needs to succeed as well as the social framework that a young person craves? Where are the adult education frameworks, and college programs for young adults with special needs, like Adina? Don’t they also deserve to continue their formal education, just like everyone else? Where are the job opportunities for these capable young people?  They are part of our society, even if they think or move a bit slower than most of the rest of us.

For example, the Jerusalem municipality should have a certain number of places set aside for people with disabilities – cognitive and physical – in its city programs. Imagine if the municipality, when planning a complex of discounted studios for artists, set aside a studio or two for artists with special needs. Nobody wants or needs a “Festival Tsamid” – a separate municipal festival for people with disabilities – that just emphasizes difference. It’s condescending, wastes public funds that should be spent on quality services and ultimately and is of no interest to anyone in the broader society.

I want opportunities, excellent opportunities for my daughter. I want people to see and really understand what she CAN do and not only focus on her limitations. Stop separating and feeling sorry for the person with cognitive disabilities! Instead, stretch your mind and open your eyes to believe in that person’s abilities and her inherent right to be an integral part of society. That will benefit the person with cognitive disabilities and even more, will strengthen our society.

It’s time to think about finding a way to integrate people with cognitive disabilities into every walk of life, naturally.  Cafe Aroma does it on a national level. Why can’t the government? It’s not because of limited budgets, it’s because of limited thinking.

A Mom’s Angry Moment. Tiger Mom writes about Disability Matters.

From the New York Jewish Week’s blog, The New Normal: Blogging Disability, March 7, 2013. Listed in the Hadassah Magazine Brief Reviews.

Thank you Helen Chernikoff for inviting me to post on this great new online forum in the Jewish community. It’s a place to talk about disability issues – with honesty and passion.

Akiva at the J'lem MarathonI’m an angry mother. I’m also a dedicated mother, and an all-or-nothing mother. Tiger mother? She’s got nothing on me. She’s too busy seeing that her kids become concert violinists, go to Harvard, come up with a cure for cancer and change the world. Pfft – that’s the easy stuff. The road to Carnegie Hall may be paved with hours of tears and practice at her house, but I invite her to join me on the Yellow Brick Road, where each brick is paved with sweat, tears, and wet sheets. Lots of laughter but lots of laundry, too. Me? I’m making sure that my kid is always treated with respect and caring, and kindness, don’t forget kindness, especially when your child requires significant help with simple, everyday activities.

Newsflash. The world doesn’t like disability. The world likes ability and uniformity. Funny how much we relish being the same. Visit any major city these days and note how much the world dresses the same, eats the same junk food and shops in the same chain stores. Walking, talking, going to school, getting a job, doing as you’re told – one nice uniform row of people going in and one nice uniform row of people going out. That’s what we’re asked to do, and what we’re asked to produce when we parent. After all, we can abort those who show themselves already in utero to be of questionable quality and convince ourselves that we’re doing it to prevent them – the unborn fetus – and ourselves, pain and suffering, that it would be too sad or too hard, or too complicated to live our lives otherwise. So why do we raise our eyebrows when we read about hate crimes? Those people were just acting on that basic human impulse buried deep inside us. Blame the world’s woes on someone else and if you can, get rid of them. They’re just dragging us down.

Sounds harsh right? But hey, today, I’m feeling harsh. I’m an angry mom, remember?

It all started with a conversation I had with my son’s afterschool program, which serves about 150 kids and teens with disabilities, many of them significant, everyday, year round.  It’s a great program, run by dedicated, wonderful people, even though I wish it was a bit more inclusive in its methodology. His current group of guys is being closed for logistical reasons. I wasn’t happy to hear of this mid-year change and was upset to hear that instead of offering my son and his buddies a chance to integrate into groups with kids who have better independent living and social skills, they were separating them into two different groups, a sort of motley mix of kids, who don’t seem to fit in with ease anywhere else.

I asked if we could try him out with a group of older and seemingly more capable boys (most of the groups are separated by sex as the program serves a predominately religious clientele). I was told, as I have always been told, that he would be lost in the shuffle, shunted aside socially because of his limited social and verbal skills. I can believe that. But the next day, I was stunned to find out that more than half his new group has mobility issues – meaning they have problems walking and getting around – and at least two are non-verbal.

A bit of background. I co-founded and run Shutaf Inclusion Programs in Jerusalem. We serve close to 120 children and teens, ages 6-21, with and without special needs, year round at our programs; vacation day camps; after school activities; Young Leadership Program for Teens and parent support groups. Shutaf is a place of complete acceptance and inclusion for all kids of all abilities and from all cultural and religious backgrounds. I told the program’s director that I don’t mind a mix of ability and disability. But where’s the other side, those kids who’d help liven up the group by virtue of their language skills and social sophistication? And really, you couldn’t engage me as parent ahead of time, and explain your educational plan and how you structured this group?

And then, I got it. I remembered that even the world of disability doesn’t always know where to place my guy. That’s what it comes down to, of course, even in the world of disability, fitting into the box.

So please, be sure and try not to have a kid with developmental delay, what no one wants to call mental retardation anymore, or worse, one with a dual diagnosis, or one who doesn’t quite fit the descriptions and labels used today. Those are the hard ones, the ones who need that other box to describe their particular needs, like my son.

My guy has always defied his labels – good for you, boyo – so, when he’s found wanting, I’m ready to go out swinging, brought to tears by people’s inability to understand that he can be included, that he deserves to be included, that it’s his right regardless of whether he can tie his shoes, or function at a level deemed acceptable by others. I hate the whole high and low functioning thing, sorry.

When that happens, I have to pull out my dukes and fight back. Because I know who he is, what he is and why he deserves his place in the world. And I say so, because I’m the angry mom.

Beth Steinberg, is the co-founder and Executive director of Shutaf Inclusion Programs in Jerusalem. Shutaf is a place of complete acceptance for all kids; abilities and disabilities; religious and secular, rich and poor, from all cultural backgrounds. FollowBeth on Twitter, and read the Shutaf blog.

He Ain’t Heavy. Thoughts about Siblings.

Boys in 2009

Siblinghood happens in an instant. Reshuffling the family order is always something of a shock to the other kids, not unlike an unexpected divorce or sudden career change. Akiva’s birth made Natan, just shy of 7, officially the eldest boy and Gabriel, who was 4, the middle child.

Our boys, who were homeschooled, played an intimate role in Akiva’s life in the early years. They were around in Akiva’s everyday life, doing their little-boy thing, and remaining part of our family’s adjustment into the world of disability. The big boys were part and parcel of every element of those early years, from daily home-visits by therapists from the time Akiva was about 6 weeks old, to trips to doctors and other practitioners, like Auditory Integration Training (AIT), Cranio-Sacral Therapy (this after Akiva’s hospitalization for epilepsy), Yoga for the Special Child, and whatever constituted part of Akiva’s program of wellness and development. We tried a lot of things.

The kids have their own memories of each office and each therapist, including their favorite mind-numbing-and-much-watched, animated version of Charlotte’s Web at the Beth Israel offices of Jane Madell for AIT, the Starbucks at the corner near Chris’s Craniosacral therapy office on 61st street, and the endless cups of tea brewed, accompanied by Natan’s earliest cooking experiments, his special cinnamon toast, made for therapists who came to the house. There are the routines remembered to this day: Jeff the PT’s workout song, Mike the OT’s patter while working with Akiva, Denise the special educator’s sort of offkey songs, and Tom the PT’s arrival, much like the postman, on his bike regardless of the weather along with his tireless efforts to get Akiva, who was a really late-walker, up and moving. We spent literally hours with each of the aforementioned people, and many more wonderful professionals, often socializing as Akiva slept through a therapy appointment, tired out from the morning visits.

I was thinking about all of this because of the story of the Long brothers, winning 2012’s Sportskids of the Year, a few weeks ago. A truly inspiring story of brothers doing things together – grab a tissue before you watch it – there are two things that stand out for me as a mother and advocate. Connor Long’s dedication to doing stuff with his younger brother, Cayden, despite disability, and Cayden’s joy at getting to be a part of the action.

I remember summers in the Berkshires, where we traded Akiva’s bike seat and later bike trailer around between us. It was a point of pride to shlep him up a hill and show your manly strength. He joined us on hikes, carried mainly by me, and by the boys for short stints until his legs hung down too far in the special backpack I found for him. The boys invented “Akiva Ball” as a way of sharing their love of basketball. Akiva made the pass and the boys finished the “alley oop,” while holding him up as close to the basket as they could, especially when he was still small. “Wanna slam dunk,” Akiva would crow with glee. Sometimes I worried Akiva would go sailing through the basket but I don’t think he would have minded. Akiva was included in many fictitious games the big boys played together, as well as given the role of superhero by a close friend of theirs, who took famous sayings of Akiva, such as “want toast,” and incorporated them into creative adventure stories.
Boys in 2011
And then it got more complicated. They got older, growing far beyond Akiva’s scale of development and interests. They took on care-giving roles, pleased to help and pleased to do their part for the family – reading books, singing favorite songs many, many times, and the even harder stuff like giving a bath, and assisting with toileting duties.

The funny thing is that even with managing stuff that brother’s don’t generally do for each other, Akiva retained his place in their hearts, their minds and their guts. They defended him, explained him and protected him and to this day, if Akiva is not at home on a Shabbat when they are, they make fun of his antics in the most loving and hilarious of ways – they know every game, inside and out. And they enjoy the brotherly exercise of horsing around with their brother, even when he’s not home.

As parents, Ira and I have leaned on our boys – often heavily – expecting them to step up to the plate as caring family members. Someone once told me that Akiva “shouldn’t be a burden on them,” something that we’ve rejected as a family. Life lived with family and love means being able to be a burden on someone and being grateful, yes, being grateful for that opportunity. Without it, our lives would be that much the poorer. Our big boys are building independent adult lives, as they should, but Akiva’s needs will and should always be important to them.

That’s a good thing. Actually, it’s a great thing, because siblings rock.

An Act of Kindness

When a frail and elderly person gets on the bus, or enters a crowded room, do you give up your seat?  If someone enters in a wheel chair, do you make room for them?  What about for the young, ambulatory person with special needs?

Our son Akiva, who has Down Syndrome, loves to take buses; he loves to see performances; he loves to go to synagogue.  He isn’t very good at standing and he needs to claim his seat when he gets to a new place right away.  Arriving with him in a crowded space is one of the most stressful things that we, as his parents, experience on a daily basis.  We know that as soon as he gets there, he is 100% focused on where he is going to sit, and he feels very anxious if it isn’t immediately apparent to him where he will find his “place.”  As his caregivers and “navigators,” we feel that anxiety build acutely as we approach with him.
When we do finally arrive with him, the stress reaches a peak.  We say to ourselves: I just hope that someone will see us walking in, see Akiva’s excitement and inability to control himself, and quickly vacate the nearest few seats so we can begin to get him settled and relaxed. We are almost always disappointed, as we wrestle him to keep him on course, climbing over legs and seats, working hard to keep him from touching everyone he passes, stressing about the loud and not so articulate noises he is making.  Even in the place we regularly go to synagogue – a small and friendly community, where most people are kind and understanding to us – we find that people don’t realize that the one thing we need most, the one supreme kindness they can show to us, would be to simply clear out the seats nearest the entrance when they hear us approach.
We try not to be resentful of this.  Though it may be clear to us, people just don’t realize how important it is to us and to Akiva, to have a place to sit as soon as possible upon arrival.  We have no way of knowing how we would react under analogous circumstances – we have trouble remembering a time when we weren’t tuned to the needs of Akiva.  Yet, we know, in fairness to us, and to our peers, who genuinely want to “do good by us,” that we have to find a way to get the message across.  Parents of children with special needs hate to feel constantly needy themselves; we want people to anticipate our needs, so that something seemingly so simple as the entry into a crowded room can be accomplished smoothly, without feeling we are the focus of everyone’s attention.  It is a small, if not obvious, kindness to show us, and can make a huge difference in our ability to cope on a given day.
Thanks to guest poster, Ira Skop.  Read and share with others.