Photographer Steve Kean, presenting his exhibition, “Front to Back” — a collection of people with spina bifida photographed from the front in color and from the back in black and white, nude; a man named Jimmy, one of the series’ participants; and Jimmy’s mother, an Italian woman who speaks little English and was viewing the portraits of her son for the first time.
“Language wasn’t needed,” Kean, 47, told The Mighty in an email.
He watched as Jimmy’ mother gently kissed the tips of her fingers and placed them on the glass over her son’s back.
“Seeing that image transported her back to when [James] was an infant and in the hospital,” Kean said. It’s a moment he’ll never forget.
Kean, who also has spina bifida, a disabling birth defect that literally means “split spine,” thought up “Front to Back” in 2013, about two years before he began photographing his eight subjects. He found individuals, starting with friends and acquaintances, through the Spina Bifida and Hydrocephalus Association of Ontario (SB&H), with which he’s worked for almost 20 years.
The series, featured as part of the Tangled Arts Festival exhibition “Strange Beauty” last April, isn’t meant to explain the ins and outs of spina bifida. Its purpose is to explore the “beauty, passion, strength and humanity of people with disabilities,” Kean says.
“I do this work to talk about ideas of beauty and how we inhabit our bodies,” Kean told The Mighty.
At the same time, Kean hopes his photos prompt viewers with disabilities to reflect on their own beauty.
“[I hope] that they see the personal power, strength and self-esteem in the images and they at least come a step closer to finding the power, strength and self-esteem within themselves,” Kean said. “But even if they simply can see the images as beautiful, I’ve accomplished something of value.”
“Front to Back” is an ongoing series, and Kean has received requests from people hoping to be photographed in Canada and the U.S. Visit Kean’s website for more of his photography.
I believe being the parent of a child with special needs is kind of like having a sixth sense, or as I like to say, having a special mommy superpower. We learn quickly how to defend our little ones from the awkward moments — the stares, the whispering, the pointing, the overabundant attention, and, of course, the awkward comments.
“What’s wrong with him?”
“What happened to his legs?”
“Why does he wear those things on his legs?”
“When will he grow out of it?”
I’m a big believer that most people have good intentions when they approach me about my son. My kids are cute (OK, I may be biased). They draw attention. People are curious and that’s OK with me. Older women will always ogle him and go straight for his hair, little kids are fascinated by the wheelchair and teenage girls, well, they’re the worst with their shrieking and “OMG! He is sooooo cute! Let’s take a selfie!”
I honestly believe they mean well, and, in most cases, they’re genuinely curious and interested. Some parents may get easily offended by all the attention, but we aren’t exactly the easily offended type. Nor have we ever been pegged as shy.
I would classify our family as more of the squeaky-wheel type. We are loud. We are proud. And we live our lives big.
People often say, “I don’t know how you do it” or “I could never do that.” I always laughingly reply, “I know how I do it. I’m just not sure why yet!” The truth is being a parent of child with spina bifida is just that — being a parent. You have your good days, and you have your ugly days. And you have all the roller-coaster days in between. To all the people who wonder what it’s like to have a child with spina bifida, I would tell them this:
1. We’re not always inspirational parents.
Our kid uses a wheelchair or special braces, and suddenly, we’re inspirational parents. Trust me, we’re not. We have our bad days, too. I yell too much, I cry too much, I let my kids eat too much junk food and watch too much TV. My house is a mess. On most days, we would not receive any awards for inspiration. We’re like any other parents trying to make the best life possible for our kids. If our normalcy inspires you — great. Glad to help. But we don’t see ourselves as an inspiration, we see ourselves as parents who are trying to master the juggling act of parenthood just like you!
2. I welcome questions. Please!
I’ll always remember the time my family and I went for pizza and the server asked me, “What’s wrong with him?” in reference to my son’s wheelchair. I condescendingly shot him down with a harsh “nothing is wrong with him” attitude. Looking back, it probably wasn’t my best parenting moment.
As a parent of a young child with spina bifida, I need to be an advocate for not only my kid but also for spina bifida awareness. It’s my responsibility to educate others as to what the condition actually is, not to be offended by non-eloquent questions. I believe most people are genuinely interested in my son’s condition. If I can help clear up the fog surrounding spina bifida, it will make things easier for other people to see how fascinating my child is.
3. Please don’t be sorry.
We’re not sorry. Really. I know you see his wheelchair or walker, and suddenly, you get a “bless-his-heart” look on your face with your hands over your heart. But please don’t feel sorry for us. My child leads an extraordinary life. His wheelchair and walker don’t define them. Define him by his smile, his heart and his soul. I don’t feel sorry for him. Sure, I have my moments. I may twinge a bit when he can’t keep up on the playground. But put him in the sandbox together and just watch what he can do. He doesn’t need your sorrow or pity — he needs your understanding and acceptance. And we need you to teach your children to do the same.
4. Teach your children about mine.
The wonderful thing about little ones is their natural curiosity. They see, they question, they move on. As adults, I think we could use an extra dose of that curiosity every now and then. Parents, please teach your kids it’s OK to be curious about my child. It’s OK to want to check out the wheelchair or the walker. It’s OK to ask why he wear those things on his legs. Please don’t hush your kids from asking about mine. Please don’t casually scoot by him to avoid a misconstrued, innocent comment. As a parent of a child with spina bifida, I go out of my way to make my kid feel “normal” and accepted. Please don’t go out of your way to make him feel that he isn’t. Teach your children to look past the braces and the equipment and to find the new friend who is waiting to play and have fun just as much as your child.
5. We could use a friend to lean on.
Too often I hear special needs moms say their other friends can’t relate to their children. While our experiences, milestones, triumphs and setbacks may all be different, we now, more than ever, could use a buddy to lean on. It’s so comforting to have someone in your corner.
One of the definitive moments of the feature film, “Sex and the City,” shows protagonist Carrie Bradshaw entering the large closet of her would-be new apartment. As the lights flicker on, she takes in the size of it (really, it’s ginormous) and imagines all of the designer shoes she will fill it with.
I cringe whenever I watch that scene, as much as I love that film (it’s a guilty pleasure). Because I would never find enough “sexy” shoes to fill that closet with, even if I could afford them all. Because the shoe industry has neglected to make shoes for women like me. Women with small feet. Women with spina bifida.
For me, an assertive invitation of “Let’s go shoe shopping” evokes feelings of being a lamb dragged off to the slaughterhouse.
I’ve been that girl — the one who has broken down in the size 5 aisle of Payless and other shoe stores. Because they don’t carry anything smaller for me.
Indeed, some of my cutest “girly” shoes are in children’s sizes. And yes, they’re flats.
I can’t wear heels unless they’re even. None of those stiletto-style heels or wedges — even the shortest heels will have me teetering off-balance within seconds of standing.
As I visit shopping malls and see signs indicating accessible entrances and restrooms, and ramps conveniently placed across from accessible parking areas, I’m reminded of how far we’ve come as a society that’s striving to welcome people with spina bifida and other disorders.
As I scour the ladies’ footwear section of any major department store, I’m cruelly reminded of how far we still need to go.
Indeed, I think my gender makes things worse for me as a shoe consumer. Men can get away with wearing more comfortable shoes, and even dress shoes don’t have heels. In fact, they could probably get away with wearing the same pair of shoes for a week straight, and no one would be the wiser.
But I feel like the entire culture of being a woman in the 21st century is centered around footwear. “I don’t know if I have shoes that will match this outfit!” “Let’s go shoe shopping this weekend.” “Oh, my shoes are killing me, and I didn’t bring rescue shoes.”
Guess what? Your “rescue shoes” are what I would wear to a social function. For me, there’s no such thing as rescue shoes because women like me can’t wear the shoes you so badly need to be rescued from.
I want to see a broader variety of shoes made available in the mainstream shoe industry — smaller sizes, 5 and under (for women, not just in girls’ styles). We need all types of shoes: professional and formal, for parties, work, school, you name it. Because sneakers are not going to cut it every single day. I need to see shoes that are wide enough and short enough for all shapes and sizes.
And if it were possible to create a larger variety of heels — smaller heels that are stable and easy to use for those who can stand — that would be awesome.
I can recall so many occasions on which I’ve attended parties with girlfriends. Near the end of the night, they’re complaining about their shoes. “God, my shoes are killing me, Laurita! You are so lucky you get to use that wheelchair. Can I borrow it?”
No, you may not borrow my chair, because it is not a one-time deal. With this wheelchair, (which I use often for events, especially when I have to resort to wearing uncomfortable boots to match an outfit) comes a lifetime of envy, resentment and anger for me because I can’t wear the shoes that are killing you right now. Because I wasn’t granted the luxury of being able to wear strappy heels that I will remove in less than two hours to dance barefoot on the dance floor after my feet have blistered.
Because as much as I hate to admit it, especially to myself, I love the shoes other women love — the strappy, shiny heels that you seem to glide effortlessly in, while I stumble clumsily in my flat boots.
Because Fate long ago decided that I do not get to live the Carrie Bradshaw fantasy for one lousy night, because that’s life.
Oh, your shoes are killing you? Then by all means, be my guest and remove them. You know what? They’re killing me, too.
As a parent to a child with special needs, you come across many moments that bring out the best in you (or the worst). If I had to pick just one, I’d have to go with the very first day I stood up for my daughter.
I was six months’ pregnant and headed for my first ultrasound (ever). I had an array of emotions coming over me. As a first-time mother, you don’t know what to expect, but at six months, you know one thing you can get out of it: gender! My fiancé and I both wanted a little girl. He was sporting a handsome little man I was privileged enough to know, and we wanted the matching set. So we hoped for a little girl with my fair skin and long hair and his smile and curls. We knew exactly what we wanted her to look like, detail for detail. The extra details that may come never crossed our minds.
It was the moment of truth, and with my aunt by my side, we began the endless clicking process. After what seemed like an eternity, the technician said she’d get the doctor to come speak with me. Again, this was my first time, so when my aunt noted that her experience was different, I chalked it up to it being a different hospital. But a part of me began to sound the alarms, especially after the doctor came in and began the same endless clicking from before. Almost three hours later, my body was shivering, either from the cold air or sudden case of nerves. Finally, the lights came on and he spoke. Nothing in the world could’ve prepared me for what came next.
The doctor explained my daughter would be born with spina bifida. He showed me on the monitor the pouch on my daughter’s back that led him to believe her spine had broken through. This would in turn prevent my daughter from ever walking. He recommended an amniocentesis to confirm, and that confirmed his diagnosis.
Now this was where I came face to face with an unbelievable reality. This doctor, this stranger, started giving me options. Option one was to abort at six months. Because “most women find the responsibility to be financially and emotionally beyond their own abilities.” He did not feel the need to go beyond that option. In my mind, I knew one thing for sure: Abortion was not an option; that was for sure. My baby has a heart. I felt it move. She was going to live. I loved her (or him). I looked him straight in the eye and said, “I just wanna know if it’s a boy or a girl?” Nothing else mattered. With what appeared to be a sigh a relief, he told me what I wanted to hear, shook my hand and sent me home.
I broke the news to my fiancé and then my family. Through the tears and questions I wasn’t prepared to answer, one thing was made very clear: she would be loved. And that was enough for me to know I made the right choice when I chose to stand by her.
Many people fear what they don’t know, understand or aren’t prepared for. And that’s what frightened me. But I learned all I could about her diagnosis. I prepared myself and my family. And we weren’t scared anymore.
So she would be different. People go all their lives trying to stand out, and she’ll be born standing out. If anything, she’s ahead.
I had nothing to offer my child but love, and for our daughter, Ellianna, love is enough. She is kind, caring, sympathetic, energetic, loving and almost always happy (she’s a preteen, hence the almost part). These kids are not special because of the extra attention or effort required to care for them. They are special because through them, kindness is found, faith and hope resides, and unconditional love grows. Everything that makes a person great is relearned through them. But they are too quickly disregarded simply because they dont meet a basic definition for the term “normal.”
I’d rather she stands out. After all, she’s meant to shine bright.
The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Although spina bifida is one of the most common, permanently disabling birth defects, most people know very little about it. Many families affected by spina bifida are working on finding ways to help redefine it.
Just over three years ago, my life was changed when I received the diagnosis that our baby boy would be born with spina bifida. Some time in the first 28 days after conception his spine didn’t fully form. He was born with an opening in his spine that required surgery when he was only 4 hours old. He’s since endured a total of 12 surgeries and has spent more than a month of his life in the hospital. I have to admit, three years ago, our family was frightened to learn all of the complications that could happen with a child born with spina bifida. So much so that we nearly gave up on his life, but instead, we decided to give him a “chance.”
Over the past three years, my son Chance has inspired me in ways I never imagined possible, something all parents of a child with spina bifida might say about their child. As a photographer, I found myself documenting his life and learning that he was born perfectly made, despite the imperfections we once feared.
Over the past three years, my son’s story has inspired many, and I’ve come to meet so many other families affected by spina bifida. In 2011, I began to photograph other children born with spina bifida in hopes of creating awareness and supporting our local spina bifida community. I hope that by sharing some information about spina bifida, along with some of the images captured over the past three years, that I might be able to further redefine spina bifida. Hopefully, this may help you learn a bit more about this birth defect that affects more than 166,000 Americans.
Many parents fear that their children born with spina bifida may never walk, and it’s true some are born paralyzed due to their birth defect. But just because someone has spina bifida does not mean they will never walk.
Many children born with spina bifida require braces, walkers or a wheelchair for mobility.
Children born with spina bifida can attend regular physical therapy to help build the strength in their lower extremities.
Sometimes, living with spina bifida is part of what makes them more determined individuals. All of the challenges they might experience with their mobility won’t keep them from living a great life.
Those who are able to take steps without support certainly learn to appreciate every single step. Spina bifida is a complex birth defect, and though a person may have mobility early in life, more complicated surgeries may be required on the spine, which may further impact their mobility.
These kids are also some of the bravest kids I’ve ever met. Some children only require one or two surgeries when they are first born, and others end up needing many more surgeries and spending countless nights in the hospital.
Children with spina bifida are often blessed with families who provide the most unconditional love for their children. All of the medical moments along the way can be trying, but sometimes it helps remind us what’s most important in life and bring us closer to one another.
It’s easy to fear how having a child with spina bifida might impact a family. The children with spina bifida I’ve known have some of the most loving, protective and dedicated siblings.
I’m often reminded that the joy within a child with spina bifida is often what gives us the strength to get through the trials that come with living with spina bifida. One thing is for sure: Children with spina bifida are just as beautiful as any other child.
Some may question the quality of life of a person living with spina bifida. Children born with spina bifida often go on to lead amazing lives, and hold careers as doctors, teachers, nurses, musicians and writers.
Many born with spina bifida are also among the most ambitious and adventurous individuals I’ve ever met.
The children born with spina bifida I’ve met are also some of the happiest kids. Regardless of how many medical moments they may endure, they are almost always found smiling.
I’ve given you so many hopeful things that help you realize these kids really are amazing, right? They really, truly are.
It’s much easier to create optimism once you’ve had, or come to know a child with spina bifida. But when a parent is expecting a child with spina bifida, it seems like one of the most heartbreaking diagnoses a person can receive. Most parents only dream of having a perfectly healthy baby. No one ever dreams of having a child with spina bifida. Along with the diagnosis brings instant fear of what may be “wrong” with their baby.
But, just because a baby is born with a birth defect doesn’t mean they won’t still lead an amazing life. Yes, it’s true – they may require additional care. Children born with spina bifida have 13 times greater medical expenses than the average child. In addition to mobility and learning challenges, individuals born with spina bifida are often born with bladder and bowel challenges, curvature of the spine or scoliosis, and some experience osteoporosis later in life. Unfortunately, spina bifida has no cure. A person born with this birth defect will endure the complications of living with it for their entire life.
I want to encourage you to help embrace those who are born with spina bifida. The next time you learn someone was born with spina bifida, don’t ask “what’s wrong” with the person – instead, try to recognize that they are just as amazing as any other person.
It hit me on our first night home. I was sitting in bed, a three-day-old baby in my arms and the heavy hush of evening all around me, when I felt it. It hit me like being woken up from a dream, like a clock chime at midnight or like a broken spell. It hit me the way truth always does when you’ve been keeping it at arms length.
This baby was so easy – and easy was much harder than I expected.
They tried to tell me. Throughout my second pregnancy I heard the words repeated by friends and family, coworkers and acquaintances, over and over again – it’s going to be so much easier this time around. They said it with such confidence, like kindhearted fortune tellers. They said it as if they knew something I didn’t. This baby would be easy. This time around would be different.
I won’t deny that the birth of my first was difficult. My son was diagnosed with Spina Bifida, a permanently disabling birth defect of the spine, at our 20-week ultrasound, and the tide of grief that carried me through those final weeks of pregnancy was consuming and deep. Still, I could prepare.
By the time he made his entrance, I knew his diagnoses forwards and back. I was prepared to have him whisked away from me after his birth. I was prepared for the five-hour spinal surgery and the placement of a shunt in his brain that would take place just days after his arrival. Even when we brought him home and I watched him struggling to breathe, turning from pale to gray to blue. Even when we returned to the hospital in a panic and learned three months later that he had severe obstructive sleep apnea and would undergo surgery for a tracheotomy. Even when it was hard – I was prepared. But nothing could prepare me for this second time around.
Nothing could prepare me for easy.
I remember a moment in the hospital. I was holding my daughter when suddenly the silence was deafening. There were no beeping monitors, no cords, no wires, nothing tethering her to this place. It was lovely, like a dream. The kind of dream where you’re weightless and flying, everything around you is light and nothing is out of reach. The two of us were floating, lighter than air and steady as the breeze.
But just as the beauty overwhelmed me, the sorrow did too. Because sometimes when you’re flying, you look down. And when I looked down, it was like I could see the other half of myself on the ground below. The half of myself that lived in the Neonatal Intensive Care Unit and wept in the night and feared and despaired. And she was looking up at me. And she was jealous. And she was angry.
It’s like I was torn in two.
Here I was, the woman I wanted to be two years ago. The mother I planned on becoming. The story I would have written for myself – for my son. But I wasn’t that mother, not fully. And I never could be. You can’t go back, you know? You can’t unsee or unfeel or ungrieve. You can’t unlive the life you’ve lived so far. The never-going-backness of it was crushing. I wanted to be up there. I wanted my son and his first few harrowing weeks of life to be up there too. I wanted us all to have it so easy. It wasn’t fair.
I fought gravity, saying “No no no. This is what I wanted. This is where I belong. This is the mother I am supposed to be. Not that woman down below. Let her be forgotten. Let her sink away.” But even my fight was in vain and even my wanting was painful. Because that heavy yearning, that pull towards easy, was hedged in by guilt. Because the things I wanted to forget, the things I wanted to change, were tethered in an unbreakable line to the little boy I loved with a fierceness that trembles me.
And so, those first few weeks with my daughter were spent at war. At war with myself and the mothers within me. I tried to strike a balance. I tried to give vent to the grief while drinking in the very beauty that sustained it. I spent my days in a cloud of joy and my nights weeping in the darkness. Every high was a low. Every single easy – the smooth curve of her back unbound by gauze and tape, the morning change of her clothes, where there was no part of her I wasn’t allowed to touch, the steady breathing that just happened without prompting – was a unique kind of hard.
I guess that’s the hard part of easy.
It opens a door to what might have been. It breaks you in two. It takes you on a weekend getaway to Italy, when all the while you know your home is in Holland. And Holland is beautiful, but Italy is too, and now your heart is broken all over again.
Except it’s not. Not really.
You should know that the hard parts of easy get easier. And when you’re divided, you can see in all directions.
I guess that’s what I’ve figured out this second time around. I guess I’m learning to live in two places. I am letting each part of myself, each varied experience, have a voice. I am letting each be recognized. And if you’re a mother like me, I think you should too.
Because, without the flying, we might never see the beauty below.
The linking of rivers. The crosshatch fields of purple and green. The connectedness of each crevice and cliff and crag.