Three times in the last eight days my son has told me either “I have disabilities” or “I have a disability”. All three times, those phrases spoken out loud by my son, left a pit in my stomach and questions in my mind.
I’ve lived in fear of Josh (or anybody else for that matter) creating an identity for himself and of himself as “handicapped” or “disabled”. I’ve never wanted to put glass walls around him or a glass ceiling above him as to who he thinks he is or how far he can move forward with living a rich and full life in spite of his extra challenges.
Since I don’t know where this road ends in terms of Josh’s development as he grows older, I have chosen to not use the words disability, disabilities or handicapped in front of him so far. Could I be wrong about being this careful with my words? Am I not being “honest” with him or myself? Good questions. The struggle comes in when you are trying to deal with the facts without squelching his desire to embrace his life.
It’s gut wrenching at times.
Every time Josh referred to himself as having disabilities, my breathing actually halted for a moment and my mind went into overdrive as I tried to figure out what I was going to say next. Did somebody tell him he was disabled? If so, who? Maybe even more importantly, why would they say such a thing? I know I wouldn’t put that thought in his head. Truth be told I’m afraid of him deciding at some point that trying to heal/ make the best of his capacity to grow and learn isn’t worth it because “I’m disabled.” My mind was racing.
I felt driving urgency to immediately solve this problem. This problem of him seeing himself as disabled. But wait. He does have a disability. He is handicapped in some ways.
(of a person) having a physical or mental condition that limits movements, senses, or activities.
having a condition that markedly restricts one’s ability to function physically, mentally, or socially.
Both of those words, which are adjectives and therefore descriptive of a person, place or thing but not “THE” person, place or thing itself, do fit in describing Josh. So do the words unique, strong, humorous, determined and special.
My fear is that instead of the words disability or handicapped being a part of his understanding that it become his identity. He is so much more than any disability he has or any impairments he lives with. He is so much more than the challenges that are frustrating to him and the activities that are off limits to him. I don’t want him to see himself as less than a complete person. There is already enough of that in this world. Especially in light of the fact that his disability, as with nearly every other persons disability, is something that was completely out of his control.
It’s been over ten years since the accident and while things are not progressing at the rate I would like, Josh continues to develop and learn. I maintain hope and I try to feed that hope into Josh. As he has becomes more aware of his challenges and the many things he cannot participate in or do, he has also started to ask more questions. Some of those questions I don’t have good answers for but I still try give him answers that helps make sense of things. Some of the answers that I do have, I don’t like. And I don’t want to say them out loud…