“Temporarily Able-Bodied” by Margaret Weis
First Parish of Watertown -April 22, 2012
Reading: “Welcome to Holland” by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
A few weeks ago I opened an email from a friend. It was one of those chain emails that threatens complete loss of luck or some other awful consequence if you don’t forward it along to 15 of your friends. To be honest, I tend not to forward them along. Actually, I very rarely open these emails at all!
When I opened the email I saw an image of a young boy of about 7 or 8 years old. He was smiling a big smile as he was running on a track. He wore a number across his chest, like the marathon runners wear. It was clear that this boy was enjoying himself, and that he had just accomplished something great … perhaps a goal that he had been working toward for a long time. The other runners were blurs in the photo behind the boy, obviously “eating his dust” as it were.
There was something about the picture that made me joyful. Perhaps it was the great big smile across the young champion’s face, or the return of that feeling I remember having when I had “won” or “accomplished” something. To be honest, the photo gave me goosebumps.
The picture had a caption. It was one of those “inspirational” captions that made this photo into a poster of sorts … much like those that hung on the walls in my dorm room during college. These posters, about love and courage, were inspirational for me when I looked at them on my way out the door each morning.
The caption on this photo read, “Motivation: What’s your excuse?”
I thought that this photo was quite inspiring, and showed the joy that comes with accomplishing a goal or doing something really, really great. When I looked more closely at the photo, I came to realize that I had missed part of the picture. The boy in the photo had prosthetic limbs attached at his legs. They were the kind that are curved and are designed specifically for running.
And all of a sudden my view of the picture changed. I still had goosebumps and I reflected on the ways that this boy had overcome adversity in his life.
It seems that the message of this “poster” was to inspire able-bodied persons to push themselves to their limits. And while I am a proponent of inspiring persons to better themselves, and I believe that often we don’t live up to our full potential, I took issue with the caption. My issue was that this child was literally being made the poster child for overcoming a disability. The point of the poster was to inspire others to overcome adversity, but the point of the picture was to capture a young child’s accomplishment.
I’m not sure the boy in the picture had any intention of inspiring anyone in that moment! I think that he just wanted to run! He wanted to feel the wind against his face as he bounded toward the finish line and won the race against his peers. I don’t think he was doing that to inspire anyone except himself to continue working for what he wants and can do!
It became clearer that the adversity this child must overcome was not only his disability but also the assumptions from others about that disability.
I can’t help but wonder about what it would look like if we both congratulated people’s triumphs AND tried to make the world more accessible and just in the first place!
But how does something like that even happen? How can we make such a drastic and overwhelming change to a system and pattern that is so rampant in our culture? I think it starts with attempting to understand … with asking questions … and by getting to the root of the issue. Perhaps that root is fear of what is different, perhaps its embarrassment or ignorance about how the world is or how it could be better.
And perhaps it is just a lack of understanding of what its like to live with a disability in a world that is inaccessible and judgmental. This takes the acknowledgement of privilege and seeing things from a different point of view.
Often, for those of us who are able-bodied, that perspective comes when we get an injury, something like a broken bone. I’m reminded of a friend who broke both ankles and spent months in a wheelchair as she healed. She hadn’t realized the inaccessibility of her part of the world until she met it each day in almost every place she went. Doorways that were too narrow, bathrooms that were on the second floor, and a pulpit raised up with stairs leading to the top.
She also spoke about the stares she would get from passersby and that people would speak more loudly to her. This phenomenon, of assuming a woman in a wheelchair has a hearing impairment, or a man who uses crutches is not able to order for himself at a restaurant, is called the salience of disability. It means that we assume that because one part of a person’s functioning is impaired, other parts must be as well. We see the disability as salient and all-encompassing of that person’s ability to live in this world.
Prior to starting my training and education for ministry, my experience was in the field of rehabilitation and disability studies. This is a small but pretty diverse career field. We focused on congenital disabilities, which are conditions a person is born with. We learned about acquired disabilities, those that a person acquires at some point following birth. We learned about mental illness, substance abuse, hearing and visual impairments, communication disorders, and developmental disabilities.
As you might imagine, there was a lot to learn! Before entering the field I was unaware of how many disabilities existed and had very little knowledge or experience with disability. I ended up declaring this area my major after learning about the justice issues that exist for persons with disabilities, and the inaccessibility of our world.
There was an assignment in my first year of study that asked us to reflect on our first experience with disability. Some of my classmates spoke about their birth, or what they knew about it, as some of them were born with Cerebral Palsy or Asperger’s Syndrome. Others in the class reflected on movies they had seen as children, where the villains or “bad guys” had a limb missing or a facial deformity. And others spoke about other children who had disabilities. I told about a boy who was in my church school class. At first, I didn’t realize that he had a disability. All I knew was that he looked and acted differently than I did. He wore a back-brace to keep his back straight and was born with one ear instead of two. This made him speak loudly and he would often get frustrated when he couldn’t hear what was going on. When we were four years old, I remember asking him what it was like to only have one ear, and he asked me what it was like to have two! I had never thought of what it was like before because it was all I had ever known.
It wasn’t until we started public school that I realized his life was different than mine. He wasn’t in a big classroom like I was, and spent the school day in a small classroom with other kids with disabilities. He wasn’t allowed to play at recess because the teachers told him he would get hurt. He spent a lot of time by himself.
A friend of mine has a son with Autism, and she talks about when he was born and the time when he was diagnosed. She often notes that it was one of the most isolated times in her life. Her friends and family struggled with how to support her, and she struggled with how to raise a child that is different from other children.
Emily Perl Kingsley writes about her experience of raising a child with Down Syndrome in her poem “Welcome to Holland.” And she paints a picture of the struggles of having a child with a disability. She also writes about the blessings when she notes that “If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
There is so much that we are capable of. Each of us is blessed with talents and the ability to live and love. And every single one of us is temporarily able-bodied. We will all, at some point in our lives, develop or acquire some sort of disability. To live is the ultimate risk, and that risk is very scary.
Each of us is born into a body that we will have for the rest of our life. I’m sure that we can point out scars or marks of times when our bodies have been broken. Some of us may think about times when our minds have been broken or times that have been particularly challenging. For some among us, each day has a constant reminder of such challenges.
And those scars, or challenges, or disabilities do not define who we are as human beings. They don’t define our hopes and our dreams, and they certainly don’t define our abilities!
I recently saw a videoclip about a teenage girl named Carly Flieschmann. She’s thirteen years old, and has a twin sister. When Carly was an infant, her parents noticed that she wasn’t reaching the benchmarks set out for her development, especially in terms of her speech. She was diagnosed with Autism. As Carly grew older and older, she continued to struggle with communication, and spent hours on end in speech therapy and other rehabilitation services. One day, when she was eleven years old, she ran to her father’s computer and typed the letters H-E-L-P and H-U-R-T into his keyboard. Her father was shocked because no one had ever taught Carly those words, and in her entire life she had never communicated with him. She immediately ran behind the couch and threw up. It was then that her parents realized that she could communicate.
In the two years since then, Carly has started to share more about her life and her experiences. She keeps a blog, and writes eloquently about her life and how it is to live trapped in a body that prevents her from living a normal life and being treated like her twin sister. She writes about her experience with Autism and explains why she behaves the way she does.
Carly’s father shared that his biggest regrets are the times that he would speak to other people, often about Carly, when she was sitting right there. He had assumed that she couldn’t understand him. He had assumed that his daughter was unaware of what was going on. But she did understand, and she was able to hear him, and she has tried to help her father and others understand what it’s like to live in her body. Technology has helped her to do that.
And yet, we live in a culture that is not affirming of people with disabilities. It is a culture that focuses on the limitations of these conditions, rather than the inherent strength that resides within that person. Our buildings are inaccessible and that leaves quite a few people out of a lot of things. All too often, people are shunned and excluded because others simply assume they are unaware or unable.
We are called as people of faith, as Unitarian Universalists to affirm diversity and the inherent human worth that we each carry in the root of our being. We are called to build a beloved community that is safe, and accessible, and open to different ways of seeing the world. We are called to affirm that each of us, regardless of our physical or mental state, is an embodiment of the Divine. Within each of us is a Divine spark that must be held in community and in love.
My friends, may we continue to work toward a world that honors and upholds that spark within us all. In our connections with one another, let find inspiration in triumphs and work together to remove the obstacles on the path to justice and equality. May we see the beauty in diversity and have compassion with one another in our struggles. And may we take the time to look around and see that Holland has tulips, and windmills, and yes, Holland even has Rembrandts.