Becoming Whole: A Sibling’s Story
by Caroline McGraw, Guest Blogger
When I was a little girl, I don’t remember having a firm concept of God, specifically. Yet I do remember having a very clear idea of what heaven would be like. I believed that heaven would be just this: a place where I could talk freely with my brother Willie.
It would be a place without the limits of autism on his part or lack of knowledge on mine, a place where I could ask him a question and receive a complete answer. I remember wanting to ask him about the details of our life; I wanted to know if Cheerios were really his favorite cereal or if he ate them simply because that’s what Mom bought. I wanted then what I want now: a window into his mind and heart.
Yet maybe, just maybe, I can only see in part because to see fully would be too much beauty to bear.
For me, heeding this wisdom means that, even as I hope for heaven, I look for those sudden windows into my brother’s mind and heart now.
I remember a time one such ‘window’ opened: during the long-ago era when my brother was obsessed with Snow White and the Seven Dwarves. He had (still has) all seven stuffed dwarves, and he loved to line them up. He referred to himself as ‘Grumpy’ or ‘Happy’ depending on his mood. I realize now that the film was probably an excellent way for him to learn about identifying emotion, since each dwarf is typecast and consistent in facial expression throughout the story.
One day, my parents asked him, “Willie, if you’re Happy, who is Mommy?” For reasons inexplicable, Willie replied, “Mommy is Bashful!” Mommy is not bashful. However, Bashful is a thoughtful, kind dwarf, so perhaps these qualities were behind his choice.
My mom then asked, “And who is Daddy?” Willie said, “Daddy is Doc!” This choice seems a bit more logical. My father wears glasses and has a calm, direct way of expressing himself. He has a quirky sense of humor, and he’s a natural leader.
Finally, my mom asked, “And who is your sister Caroline?” With no hesitation, Willie said, “Caroline is Snow White!”
So there you have it. To my brother, I am a Disney princess. He may not be able to say things like, “Caroline, I look up to you,” or, “Caroline, I’m glad you’re my sister,” but he can cast me in a starring role in the movie of his mind.
I may not be able to see all I’d like to see of my brother’s mind and heart, but what I can see is astonishing. He’s creative, and hilarious, and generous with his casting.
***
One day, as I was walking home in Washington, DC, I passed a family on the sidewalk. Mom, dad, grandma, teenage guy, walking and smiling. And I passed I noticed that the teenager had some form of physical (and perhaps intellectual) disability.
In that moment, I felt such a strong combination of feelings: happiness that this family was out on the town together; sadness for the experiences of ostracism and prejudice that this teenager and his family have undoubtedly faced because of his disability; grief at the way that they’re not supported by society as a whole, because the rest of society sees themselves as ‘whole’…
…and then a bittersweet joy, because I can only imagine the kinds of amazing gifts this guy has to share.
I was almost in tears…simply from seeing a stranger’s face. And that illustrates my passion perfectly: to seek out the treasures in each person, and illumine those treasures through story.
To write and fight and work and strive for a world in which we celebrate people not just for what they can and can’t do, but for who they are and how much they are able to love.
And that’s what [my work] is all about: assuming the subversive stance of loving people—including ourselves—for exactly who we are.
Such acceptance is radical; such relationships are rare. Yet I know that it is possible to love without agenda. It is possible to say to someone simply, “I love you, and I celebrate you. I will walk alongside you as you grow and change, but I won’t put pressure on you.”
***
At times I wonder what my life would have been like had I not been Willie’s sister. I know my parents have wondered the same thing: what would life have been like for us, for him, if he had not been born with autism? I cannot deny that it has been a difficult road for us. Yet I cannot bring myself to wish for a different path. It does no good for me to speculate and compare my brother to imaginary, non-autistic brothers I ‘might’ have had.
What can I do? I can accept our life as it has been, and celebrate what holds us together. In doing so, I’m learning to reject comparisons and embrace what is. And what is is downright puzzling. It calls into question all my old assumptions.
At times I wonder how much of the pain of my brother’s disability has come from autism itself, and how much has stemmed from the distance I have felt between him and the rest of the world. As a society, we don’t believe that people with disabilities have incomparable gifts to offer us. We don’t believe that people with disabilities can teach us about overcoming adversity, and what it means to be whole in the midst of brokenness. And this is our loss.
At times I feel like my brother’s defender, as though I was meant to be his protector against the prejudice of the world. And it’s true—this is a way of loving him and advocating for him. Sometimes, that may mean standing up for him. It may mean asking a dear friend not to use the word ‘retarded.’ It may mean speaking at budget hearings and advocating on his behalf and that of others like him.
Yet most often, keeping the faith means simply being there for him in the day-to-day matters, in the ordinariness of life. For example, I’ve committed myself to calling him weekly, to being a part of his routine. The most important testament of my love for my brother isn’t in my words. It’s in how I relate to him. It’s in a willingness to do things that benefit him. It’s picking up his medications for him or calling him or attending his piano lesson when I’m home, to see him shine.
Standing in solidarity with Willie is the boldest statement I can make. I’m saying: not only is my brother worthy of love and belonging, not only is he uniquely gifted…he’s akin to me, and he’s my friend.
Caroline McGraw is a would-be childhood paleontologist who digs for treasure in people with autism and intellectual disabilities at A Wish Come Clear, and empowers caregivers to do the same. This post is excerpted from her book, Love’s Subversive Stance: Ground Yourself and Grow in Relationship.
