I’ve been thinking —obsessing really —about “Disablism” and what it means to me. I’ve been trying to find some righteous flame of resentment within myself about how someone may have treated my son because of his multiple disabilities. Countless examples have flit through my brain over the past 24 hours but none of them really aroused my ire enough to inspire any pithy, erudite pearls of insight or gems of wisdom to dispense. Not that these posts are necessarily about that at all.
Instead, it’s given me an opportunity to examine something a little closer to home —my own thoughts about my son’s disabilities. God, I hate that word — disabilities — so much! There is no less cumbersome way to describe Nik though than “disabled”. He is certainly “differently-abled,” “challenged, “orthopedically/visually/cognitively impaired,” …take your pick. But I see so much more than that each time I look into my sweet toddler’s long-lashed eyes or glimpse his impish, yet cherubic, smile.
In my waking hours I fight tooth and nail to help my boy get what he needs to be able to do more than just survive in this world. I take him from specialist to specialist, evaluations and therapies, school, the park, the playground, and ad infinitum. All in an effort to help Nik adapt and learn, to develop and grow to his potential. My husband and I try to parent in a way that is gentle and loving, accepting and respectful of Nik and all his quirks and talents. We are, by many people’s declarations, “the best parents” — “the right parents” for this little blessing whom God has bestowed upon this world. It’s not a sham, it really is how we live and the belief we hold is that our son can do ANYTHING.
But, in the stillness of night, sometimes in the quiet twilight before dawn when no one else is awake, I lie in bed and cry with the ache of the unfairness of it all. The exhaustion of grief held constantly in check so no one else can see the inner struggle to constantly rise above the emotions. I visualize the moments of my child’s life which may never be. It’s never a simple vision as it is juxtaposed with the current reality of the moment and inextricably twined around prayers for those moments and achievements that I hope will be. I seethe with envy over the ease with which my sister’s beautiful children take for granted their ability to walk, to talk, to feed themselves —while studiously avoiding their little cousin who makes them uncomfortable.
If I am glaringly honest —even in the stillness of those hours before sunrise when I am raw with feeling— I must confess that, perhaps, I too have a bit of the “disablist” in me. How could I not? Our culture worships the super-achievers among us —the great scholars and inventors, the athletes, artists, and aesthetes, the genetically superior, the richest, etc. We have come so far in creating a world that will accept our “also-rans” and our “less-than-perfects” with respect to making accommodations and provisions in the name of equal rights for all. But have we really come that far after all, when mainstream journalists still refer to special education as a “social malady” or when there is no representation of our disabled population in any of our entertainment media, no groundswell of community support to change our education system to ensure that EVERY child gets a real education? Are we kidding ourselves when we, as parents of children with disabilities, state so vehemently, “I wouldn’t change a thing about my child!”?
I, for one, willingly confess that there are many things I wish I could change about my son. I would gladly take away all of the physical limitations which keep my amazingly curious child from being able to experience the world to the fullest. Would that I had a magic wand to wave which would allow him to walk with ease, to eat with gusto, and to chatter his three-year old thoughts to the world. I would not change the essence of who Nik is for anything in the world; but I don’t think that his being and character are necessarily shaped by his disabilities. I see many facets of myself and my husband within Nik. It does not surprise me that his means of communicating with me is music or that he tinkers with every toy to figure out how it works (not how to play with it, but how it works!) much like his scientist father. Nor does it surprise me that he is stubborn, determined, and fiercely independent. Nik’s personality is not shaped by his limitations; his personality is what allows him to persevere in spite of them.
As the sun rises and I slip on my mantle of unshakeable motherhood, I rise to face a new day, immensely grateful that I am not alone in my desire to make the world an easier, more welcoming place for my child and for others like him but so completely unique. So very differently-abled.