"What's wrong with him?"
These words have not (yet) been spoken to me about Eli but I do know many families who have heard these words or ones similar to them. I have to put it out there because I have been mulling it over and working through the feelings and sometimes complex issues that surround such a statement.
Let me first start by saying, there is nothing "wrong" with my child. Yes, he has Cri du Chat Syndrome; yes, he is just starting to take steps at the age of three; yes, he is nonverbal and is just now starting to make sounds and imitate the movements of our mouths; yes, his sounds are high-pitched and sometimes pretty loud, especially when he is happy and excited (which is pretty much every moment of the day). BUT! BUT this does not mean there is something "wrong" with him.
When you use the word "wrong" it implies incorrect, worse than, untrue, bad.
There is nothing "wrong" with Eli or any human who may have a certain condition or syndrome. The thing that IS wrong is the world around us that has been structured for a portion of the population that can do things like move about using their arms and legs, think in one specific way, communicate with words and express emotion in a certain (fairly restrictive) way. For those that lay outside of that super narrow definition of humanity? There is something "wrong" with them...they are a burden on their families or the system...it's too difficult to accommodate or include.
Each and every one of us are on a continuum of ability and have our own strengths and weaknesses. We are all human and therefore have our own human needs. Yes, Eli will need support throughout his life, and, as he is very simply a HUMAN being who is equal to those around him, his needs should be seen as HUMAN needs. Not special and exceptional but normal and important.
I truly believe that the human race is evolving and we are moving more into a place of accepting many different forms of human nature as NORMAL. I also know that it will take time to work on those structures (both physical and social) that hold a significant portion of the population back simply because their needs were just not considered until very, very recently. This is why I write this blog. To show everyone that our lives are normal and happy and sad and fun and challenging and joyous, just like everyone else's.
SO, please, the next time you think to associate the word "wrong" with any person who may lay outside your narrow definition of HUMAN, please reconsider. I know our family is comfortable with questions - "Why does he wear those braces on his feet?", "Why isn't he talking?", "What therapies does he do?" - as long as they are respectful of Eli and as long as they come with a curiosity and a willingness to learn about him as a human.
I can't say it enough - there is nothing "wrong" with Eli or anyone else. He is one of a million of amazing people on this planet who is here for a reason and will be shown the respect and love that he deserves.
Love and light,