“Let Freedom Ring!”

Hank to P.T. 10:12:2011

Today marks the anniversary of our great country’s independence and I say,  “Let Freedom Ring!”  It is also a day that I reflect on the different ways that each of us attains our own personal independence.  I reflect mostly on the beautiful freedom that, to me, defines the life of my son Hank.     

As most of you know Hank is physically challenged.  He cannot be left alone because he needs others to care for him fully.  He needs his meals prepared and support to eat them.  His personal care needs are met with the loving hands of myself, his Dad, good friends and two wonderful caregivers. 

Hank has a very reliable ‘tongue click’ for yes, an ‘all done’ sign, ‘happy knees’ that show joy, great facial expressions and eye gazes, and body language that those of us who know him well can read.  But in order for Hank to communicate fully on either his IPad or Dynavox he needs physical support for typing and pointing.  This method is called Facilitated Communication.  Since this mode can be very tiring for Hank, there are many times when it is necessary for those who know him well to interpret for Hank and speak for him.

As I have walked the journey of Hank’s life with him these past twenty-three years, my ideas about what makes a person independent have changed.   These ideas have been naturally evolving from the moment that Hank was born.  I remember, however, the first time I was asked to begin to consciously make this thinking shift.  It was at the Jowonio pre-school that Hank attended, and it was through his teacher and my subsequent dear friend Zan Currin.

I remember the setting very clearly.  Zan and I were in the hallway outside of the classroom.  I was strongly advocating that Hank not use his wheelchair in an activity.  Hank was, and is, often not in his wheelchair.  His Dad and I have always encouraged that Hank have as many movement and seating opportunities as possible.  This is not only for the benefit of his physical health but, importantly, to enhance socialization and perspective from both his eyes and the eyes of those he encounters and interacts with.

Zan is the wisest person I have ever known regarding many things, but in particular inclusion and advocacy methodology.  She is kind, loving, and in her role as Hank’s teacher had a way of getting her point across to me in very clear and compassionate ways.   She maintained a great deal of respect and understanding for my place as his loving and sometimes…well…often…helicopter-like mothering of him.

She said to me, “I understand and agree with you about Hank not being in his wheelchair all the time.  But remember that Hank’s wheelchair gives him independence and it’s important that he explore that as well.”

This may seem obvious, but to me it was a “Wow, I could’ve had a V-8!” moment.  It planted a seed in me of looking at Hank’s reliance at times on his wheelchair, other forms of adaptive equipment, and people, as a door to freedom for him rather than things that kept him separate and dependent.

And as I write this I am thinking about how so many of the things that I am dependent upon give me freedom.  Electricity gives me light at night so that I can see after the sun goes down.  I have a strong body that moves as I command it so that I can lift Hank when I need to. The physical strength of myself and others makes it possible for Hank to be seated in a car, as pictured above, so that he can ride off to a concert, a therapy, bowling with friends or acting class.   My loving family and friends give me very strong support that so often carries and sustains me. And of course my God who is my rock and constant companion.

So on this day of independence, let us celebrate the freedom that we enjoy because of the supports that we all are given in one way or another. Dependency, or rather inter-dependency as I like to think of it now, can be such a wonderful gift.  It can help us to rise to heights of freedom that we may otherwise never have reached.   

I say, “Let Freedom Ring” from the feet that we stand on, the wheelchairs that we roll in and the ramps built by capable beings that allow us to enter a building.  Let it ring from the walkers that we walk with and  the running shoes that we race in.  Let it ring from the arms of those who hold us, the children that we carry,  and the therapists and teachers who learn about minds and bodies and how to guide them to their highest potential.  Let it ring let it ring.  There is nothing so beautiful as the joyous ring of freedom!

{ 2 comments… read them below or add one }

Terry Quigley July 4, 2013 at 7:38 pm

Such moving and beautiful words. Thanks for sharing!

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Maureen Quigley July 4, 2013 at 7:44 pm

Thank YOU Mar for being one of my very strong inter-dependents! 🙂

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