In early December, 2006, I found myself at Barnes and Noble Booksellers. This should surprise no one who knows me. I adore books and create any excuse to surround myself with them, browse through them, smell them, buy them. I even read them. Happily. Enthusiastically. Voluntarily. Voraciously.
On that particular day in December at Barnes and Noble, I bought something or several somethings—honestly, I don’t remember. I do remember that the check-out clerk asked if I would like to donate a Godiva chocolate to disabled children in our area.
Who can say no to such a request? I pictured in my mind a small child with a serious disability—say, Down syndrome or paraplegia—enjoying a piece of chocolate. That chocolate wouldn’t change his life or make it easier, but absolutely no one can be unhappy or worried while eating chocolate. If Elvis had eaten more chocolate and done fewer drugs, he’d still be alive, don’t you think? Buying a chocolate for a disabled child was the least I could do. So I did it and checked my to-do list for the next holiday errand. I didn’t give that chocolate another thought.
A week later, I went through Jack’s backpack to clean out the day’s work: artwork of Christmas angels made with his handprints, beaded pipe cleaners hooked into Christmas ornaments, the usual assortment of notices from the teacher regarding the Christmas party, pajama day, the book exchange. At the bottom of the mess was a foil-wrapped Godiva chocolate with a note attached.
I’ll give you one guess what that note said.
My child. Disabled?
Of course Jack is disabled. He had been receiving services through IDEA—the Individuals with Disabilities Education Act—for three months. He had had a diagnosis of Pervasive Developmental Disorder, Not Otherwise Specified for five months. He attended speech and occupational therapies at Children’s Hospital and went to two different schools to meet his needs. My schedule was topsy-turvy just trying to get him where he needed to be each day.
None of this added up to “disabled child” for me that day at Barnes and Noble. Then, my definition of “disabled” included only huge, obvious, “bad” things that keep people from functioning normally. Disabilities are made up of amputations, or assistive apparatuses, or senses that don’t work, or brains that can’t learn, or bodies that can’t speak or walk or move easily. Disabilities are really hard things, things that create barriers in life that most people don’t face, barriers that other people face.
The Godiva chocolate in my hand laughed mockingly at me and said, “Your son whom you love more than life itself is ‘disabled.’ What do you think about ‘disability’ now?”
I just hate it when the universe dope-slaps me.
I’ve learned that we really do have a choice how to react to situations like this. It’s easy—and pointless—to take these ironic dope-slaps personally. The universe isn’t picky about choosing its victims, and absolutely every person on this planet gets dope-slapped at least a few times in the course of life. When we take it personally, we are the ones who suffer, mainly from that dreadful waste of time called self-pity.
This reminds me of an apt quotation from the sci-fi series Babylon 5. (You see, I’m a geek as well as a dope.) Marcus, my favorite character, said: “I used to think that it was awful that life was so unfair. Then I thought, wouldn’t it be much worse if life were fair, and all the terrible things that happen to us come because we actually deserve them? So now I take great comfort in the general hostility and unfairness of the universe.”
On that December afternoon two years ago, in the face of the general hostility and unfairness of the universe, I chose to laugh at the mocking bit of fine chocolate. Yes, Jack is disabled. His disability isn’t so obvious as Down syndrome or paraplegia, but it is real and it is hard. It does put up barriers for him that most people don’t face. As Jack’s mother, however, I had instinctively chosen to focus on his abilities rather than thinking him “disabled.” Even though his brain works and learns differently from other kids’ brains, I focused on the fact that it does work and it does learn. His hands don’t do fine motor tasks as well as other kids’ hands, but they are learning and can already do a lot. He still has difficulty telling me a story or answering questions, but his speech improves daily.
This is how love sees disability.
Far be it from me to promote political correctness (I prefer good manners), but the PC term “differently abled” has merit. It’s all in the perspective, how you look at it. Yes, we all face really hard things in life, whether we qualify as disabled or not, and these challenges can overwhelm us at times with worry and stress and fear. Been there, done that. Haven’t we all?
But by shifting our focus we’re able to see those challenges differently. To a certain extent, it really is “all in our heads.” How many mothers of children whose disabilities are more severe, more obvious, more challenging than Jack’s see their children through the same filter of love, that same focus on ability rather than disability? My big mistake was in assuming those families were different from mine.
One day last summer, while I waited for Jack to finish speech therapy, a mother and son sat down near me. The son was hard to miss: a large teenager, nonverbal, squinting, tongue sticking out of his mouth, playing with his hands, barking. Well, it sounded like barking. His mother patiently settled him, asked if he wanted a drink, handed him a sports bottle with a straw, told him gently to keep his tongue in his mouth, made small talk without expecting a verbal response but was attentive to nonverbal cues. I was struck by how patient and calm she was. Every time he barked, she smiled. She never shushed him.
There aren’t many moms who could go out in public with a barking teenage boy and make it look like the most natural thing in the world. By the grace of God, she pulled it off and made it poignant and beautiful. I saw God in action in the waiting room.
As it’s impolite to stare, I turned back to my book but was distracted when I heard her speak to another waiting mother: “Oh, that’s his happy sound. He makes it all the time. He is always so happy and brings such joy to our lives. I don’t know what we would do without him.” Love literally glowed from this mother. You could tell she wanted to share it with the world, wanted the world to see her son the way she did. I looked at the young man with fresh eyes. I could see what she meant. He did show joy; I had missed that before because I was looking only at his disabilities.
No doubt the universe heaped its general hostility on this mother and son. No doubt she has felt frustrated, scared, and angry, and has wondered why. No doubt her son is severely disabled. But she made a choice at some point to accept her son for who he is, to see joy and love in him, and to give joy and love to him.
Don’t we all long for acceptance? Don’t we all long for love and compassion and understanding that is unconditional? But how often do we give that sort of love? It’s easy to accept someone who’s just like you, who acts like you, looks like you, and shares your beliefs, interests, language, and politics. It’s harder to accept difference in any form. Much harder. History is largely the record of our collective failure to accept difference.
I don’t know about you, but I don’t want to be judged or dismissed or ignored or feared, and I certainly don’t want either of my children treated that way. We’re all different, but we are also all children of God, human beings created in His image with great capacity for compassion, love, and joy.
An American soldier stuck in the sandstorm during the invasion of Iraq said, “Embrace the suck.” He couldn’t change the weather or the fact he was in it, but he could change his attitude. He embraced the sandstorm just as that mother smiled each time her child barked in joy. The outside world may see our challenges, whatever they are, as uncomfortable, painful, unfortunate, disabling, or tragic, but we don’t have to see them that way at all. When the universe is hostile, we need to embrace the suck, and sometimes we can even transform it into something beautiful through love. Doing this is hard. It requires courage to stand up to the universe’s hostility and let go of a lot of indulgent wallowing in self-pity, but it’s worth the effort. At least I believe it is.
As for the Godiva chocolate…I ate it myself because Jack won’t touch any chocolate that isn’t an M&M or cake frosting.
Don’t you just love irony?