In-Betweenness of Disability

Tuesday, April 14th, 2015 | Children with disabilities, Children with dispraxia, Developmental Coordination Disorder, Parents of children with special needs, Social Communication Disorder

In-Betweenness

Is it finally springtime in the Northeast?  Last year, I wrote the following blog post after a horrendous winter and mourning the loss of a loved one.  I was ready for springtime and renewal, but I never published my writing.  This year, I am ready to publish, mostly because I have grown, and more importantly, my daughter has grown. I was reminded that healing is gradual and continuous. Even in the midst of renewal, everything is not yet fully healed or whole. We often inhabit an “in-betweenness” in our lives—sometimes we seem okay, and sometimes we do not.  That’s how it is with my daughter, Eve.

Santa vs. the Easter Bunny

Last April, Eve and I traveled to Yankee Candle Village in South Deerfield, MA.  While there, we enjoyed time with both the Easter Bunny and Santa.  I know, it sounds ridiculous!  One of the beautiful parts of Yankee Candle is that it’s Christmas year-round, while still celebrating seasonal holidays as well.  Basically, it’s a child’s wonderland, and Eve loved it.

IMG_0636

Although it made perfect sense to me, to an outside eye, it may have appeared fascinating that Eve was enthusiastic, affectionate and talkative with the Easter Bunny, while extremely tentative with Santa.  Yet, for a child with Social Communication Disorder, the Easter Bunny is a dream-come-true, because he’s encased in a furry suit and doesn’t speak.  Meanwhile, we all know that Santa will be face-to-face in his trademark red clothing– and sociable.

Furthermore, Santa was engaging children in crafts that required careful fine motor planning, which is a nightmare for a child with Developmental Coordination Disorder.

IMG_0662

From the photographs, one may see that Eve did well with both Santa and the Easter Bunny, though.  There are no visual indicators of Eve’s disabilities, so folks naturally assume she’ll be okay in a variety of situations.  Yet, Eve inhabits an in-between space with her abilities.  Since the Easter Bunny was fluffy and didn’t verbally communicate, Eve was quick to hug him, speak to him, wave, etc.  However, when Santa was attempting to have a seemingly age-appropriate conversation, Eve couldn’t respond.  When Santa attempted the flower craft with Eve, he immediately noticed that Eve required more guidance and support with the intricate handwork.

I’m not the first person to consider the in-betweenness of disabilities.  In fact, each year Temple University hosts a symposium on the changing landscape of how we perceive disabilities.  Their theme for the spring 2014 conference was: “In-Between Spaces, Places, and Ways of Being.”  I could not think of a better title for enhancing awareness of living life with a disability.  Life is filled with transitions, and people need strategies to navigate a variety of changes in their lives, regardless of ability level.   At Temple, they consider changes between identity categories, life stages, or disabling/enabling environments.

 

Understanding In-Betweenness

As the mother of a child with issues that hinge on the idea of in-betweenness, we sometimes struggle with movement between places, and ways of being. Other days, we don’t struggle.  Eve has taught me to be in the moment.  As her mother, and as an educator, I have an idea of where she “should” be, both academically and developmentally– but perhaps in the future.  Certainly, we have goals, and Eve receives speech and occupational therapy, in an incredible school.  Yet, I need to accept Eve for who she is, and what she is capable of right now, in this moment.  I accept her and see her for who she is– not what I want her to be.

My hope is to provide advocacy and support for the children and parents who have been affected by the in-betweenness of certain types of disabilities, which tend to be less visual, and not nearly as understood. Since I have a background in special education, I already thought I was pretty humble.  To be the mother of a child with special needs, especially needs that aren’t often visible, and that occupy an in-between space, has made me infinitely more humble.

Some children, such as Eve, occupy in-betweenness in the ways they appear okay, yet they’re having trouble processing information.  For example, Eve might suddenly scream, pull her hair, or place an inappropriate object in her mouth.  She may appear shy, yet she’s really not introverted; she just can’t sometimes retrieve language to respond, or to formulate a story.  She’s going to be okay, yet everyday feels like a battle to do the simplest actions, especially those that involve motor control, such as riding a bike.  Eventually though, Eve did ride a bike, and I cried tears of joy when those tiny feet pedaled.

photo-38

In a landmark study by Lukia Sarroub in 2002, she articulated the term “in-betweenness” as a powerful heuristic to signify the hybrid adaptation of one’s practices or identity to one’s textual, social, cultural, and physical surroundings.  This notion of in-betweenness is an effective concept when considering that people often occupy and practice nearly everything in in-between spaces.  I keep this in-betweenness in mind with Eve because I find joy in the simplest things she does and experiences, and in the same day, I sometimes feel anguish and intense anxiety about skills she has yet to master.  We’re somewhere in-between.

Hope in the In-Betweenness

At the end of the day, I acknowledge our in-betweenness as hopeful. From texts as old as the Bible, we can cherish the words “hoping against hope.”  Just when I thought Eve might never write, she wrote her name.  Even though the letters aren’t the lovely script she’s learning at school, her signature is instead filled with distinctive, artistic flair.

IMG_1234

Just in the past year, Eve has grown tremendously.  She can now swing independently on a playground swing, finally pumping those little legs.  She has made friends, and even has little, inspiring conversations with them.  Instead of being obsessed with princesses and the “Frozen” movie, Eve is passionate about simple, natural objects, such as flowers, animals, and pinecones, and I think that is pretty cool.  For now, I’ll treasure this in-betweenness, because just as springtime provides us with imperfect renewal, our growth is gradual and continuous.

IMG_8150

Christine Woodcock, Ph.D. is the Learning Disabilities Specialist at Northwestern Connecticut Community College, and an adjunct professor at American International College, where she specializes in literacy education.  

No comments yet.

Leave a comment

You must be logged in to post a comment.

Books

Click here The Evolution of Us to read more and buy my latest book!