ALIEN BABY

Fear.  The first response was fear.  The pregnancy had been normal.  The baby was not.  My cousin and his wife had birthed a child with CP, and (before I was disabled), my first emotion was, I must be truthful here, fear.

What had they done?  What had gone wrong?  How could this happen?  How would they manage?  Would they give him up for “adoption?” [Such a stupid stupid question!]

But I had no experience with disability at that time.  I had known a few kids at school in “special ed,” who were maybe not all that bright, but they were pretty average.  I had not EVER encountered, in my very sheltered late 1950’s-1960’s world, any disabled children.   Only on the Jerry Lewis Telethon (God forbid!).

So, when this unexpected, unprecedented event happened in MY OWN FAMILY, it was like a bolt from the blue.  AN ALIEN CHILD!

I had considered having a child in the future, and now, suddenly, the thought that this child could be so, well, not normal, was terrifying to me.  More terrifying than mortality.

With death, it would either be all over, or there would be some kind of afterlife.  This thing, this CP, seemed like a penance from hell for my cousin.  [At that point I was not even thinking about the little boy].

All I knew was, I did not want this to happen to me, and I wanted to know how it had happened to them.  No compassion.  No instinct to help.  No desire to be a support to this cousin who had been a friend since my earliest memories.  Only this cloud of extreme fear.

Years passed, and I learned many lessons from my cousin, his wife, and the child.  They loved him, cared for him, he grew, and I learned to love him too.  Their whole life changed.  My cousin had just earned an engineering degree at a prestigious school, and now he was going to continue in a dead end job in a small town because the services were very good and the community was supportive.

It seemed to me, despite my love for this child, that he had somehow ruined my cousin’s life.  I never once looked at it from the boy’s point of view until he was in elementary school. There I observed him as a ‘real person,’ trying to keep up with the other kids—most of whom accepted him well, by the way.

He is now an adult, fully trained and managing a career of his own.  My cousin and his wife still live in that little town, with that little income in that little career because of the choices they made on his behalf, but he is a strong, beautiful, wonderful, loving young man.

What I learned, for myself, is that a core reaction of an able bodied person can be fear, and that it is this fear that can cause so much of the discrimination that we are fighting.

Fear is a powerful emotion.  Fear of the unknown.  Fear of contagion.  Fear of saying or doing the wrong thing.  Fear of seeing those we love in pain.  I believe that this is the part of the key.  Disabilities have been, and still are, so unknown.  As we fight for our rights, I believe we must also educate as fast as possible, because as fear lessens, acceptance begins.

 Many of us have questioned how extreme family reactions can occur. Disability is so unfamiliar, even today.

We have made tremendous strides, and the ADA laws have helped a great deal.  Children with disabilities are not hidden away, are in society, are in schools, grow into jobs.  Adults who acquire disabilities also do not need to hide in the same ways that were formerly the case (we need only see the movie “Music Within” to understand to what I refer).

My dear baby cousin’s birth and childhood growth was a lesson for me as I learned to overcome my own fear.  How ironic, we may think, that I became disabled myself in later years, at the point where he entered adulthood.  But I prefer to think that I became disabled at the point where the world is starting to change because of the courage of people like my cousin and his wife to ‘fight the good fight’ and raise that boy to become a strong man. 

I am embarrassed by my first reactions, but, then, I was young and inexperienced.  Hopefully, I am a wiser, kinder, more educated person now.  Yet my experience allows me to understand the seemingly incomprehensible behavior of those from whom we expect, and indeed perhaps have a right to expect. the most compassion and support.