“Mom, when are you going to write a book about me?” my 7-year-old son, Noah, asked as we sat on the floor of his room, surrounded by packing materials from the box that had arrived earlier that day. Inside were copies of my new book, each with a picture of me holding Noah’s brother, Henry, on the cover. Henry has Down syndrome, and the book is about the first three years of his life. Noah had come home to find Henry admiring it while I danced around taking photos for our Facebook page. Noah stood by watching the commotion patiently enough. He understood that Henry was having his turn. He just wanted to know whether the next book would be about him. http://parenting.blogs.nytimes.com/2013/10/10/growing-up-with-a-disabled-sibling/?_r=0 The truth is that I have no plans to write a book about Noah. Unlike his brother, he does not have a disability. His arrival was a momentous occasion for my husband and me, but no more than that of any other baby. So far, he has hit all the usual milestones. He makes friends easily, has quirky interests and is successful in school. I think he’s brilliant, charming and special. I also know that none of this makes for very good reading. The fact of the matter is that it is unlikely that Noah’s turn will ever come.
We parents put a lot of energy into teaching our children to take turns. We try to avoid jealousy and strife by doing our best to ensure that each sibling gets an equal portion. Katie Roiphe wrote recently about the pain of discovering that the promise of sibling equity is a myth. We delude siblings by telling them that they are equal, she argued. The promise that talent, good fortune and accomplishment will be evenly distributed among their ranks is a lie. Inevitably, there comes a time when those inequities are exposed, leading to resentment, insecurity and conflict. Where some siblings overcome such tensions, others — like Ms. Roiphe and her older sister — are irrevocably damaged. Ms. Roiphe’s essay struck a nerve because I have a sister of my own and our relationship has certainly been through the cycles of acrimony she describes. But I also believe that these dynamics are quite different when one sibling is disabled. Instead of starting off with perfect equality, there is an immediate imbalance of health and ability. Instead of discovering, years down the road, how life’s gifts have not been fairly apportioned, that is where the relationship begins. There is abundant literature on the consequences of growing up with a disabled sibling, much of it negative. Books with titles like “What About Me?,” “Being the Other One” and “The Normal One: Life with a Difficult or Damaged Sibling” report that the able-bodied child is often neglected as his or her needs are subordinated to the more pressing demands of the disabled sibling. This asymmetry can lead to all sorts of consequences, from hostility and resentment to compensatory overachievement. Siblings of people with disabilities often complain of feeling isolated and confused. When they are young, they may be fearful of contracting the sibling’s disability, or be stricken by guilt that they are responsible for causing it. They may worry deeply about the disabled sibling’s health and well-being. They may feel compelled to try to be perfect in order to compensate for the obvious imperfections of the disabled sibling. They may also act out, resenting the attention that goes into caring for the disabled sibling. At some point, the typical child may feel shame or embarrassment at having a sibling who is perceived differently by others. As time passes, nondisabled siblings often worry they will be responsible for the long-term care of a disabled brother or sister. Of course, the news isn’t all bad. Some research suggests that growing up with a disabled sibling can also infuse a person with a greater sense of responsibility, patience and compassion for others. Some siblings may be inspired to go into a helping profession, like medicine, teaching or public interest law. Others translate their early experience with disability into a greater appreciation for, and understanding of, the wide spectrum of human differences. I confess to keeping my own list of successful and accomplished people who have a sibling with Down syndrome, which includes the Olympic snowboarder Kevin Pearce (now himself disabled by a traumatic brain injury), the actor and singer Jamie Foxx, the actress Eva Longoria, and Amy Chua of “Tiger Mom” fame (and a Yale Law School professor). I also realize that it’s far too simplistic to say that having a sibling with a disability is either a plus or a minus. More important is the fact that disability may amplify the inequities that are an inevitable part of all sibling relationships. My sons are 5 and 7, and I know that our journey is still in its early stages. So far, they relate to each other much like other brothers. They fight and jostle for attention; they also play happily, taking joy in being together. Sometimes Noah ignores his little brother or wishes he would go away. At other times he is patient and gentle, and he does silly things just to make Henry laugh. Henry thinks Noah is the funniest, most interesting and most important person in the world. I know there may be times when Noah is resentful or ashamed of his younger brother, and there will be times when Henry feels rejected or ignored by Noah. I like to believe, however, that their happy beginnings will inform a more enduring relationship. No, it will not be equal. It is unlikely that Henry will have access to the same range of opportunities and experiences as his older brother. And Noah will probably never be the subject of a book, at least not one written by me. But I remain hopeful that an early and well-managed experience of those childhood inequities will help to make them more accepting of the inevitable setbacks and challenges they encounter as adults. “You knew it when you were 4. The yellow lollipop is not the same as the red one,” Ms. Roiphe concludes, reflecting on the inevitable inequities of siblinghood even in the family where everyone is, for the time being, able-bodied. Perhaps the lesson here is not the bitter discovery that one sibling has more than his or her share of career success, romance or creativity. Maybe it’s that people who don’t reach those predictable markers of happiness might take more complicated and interesting paths to satisfaction and insight. It is a good thing that we don’t rely on the wisdom of 4-year-olds. And when we grow up, we may come to value the fact that not all lollipops are the same, while understanding that all are sweet. -------------------------------------------------------------------------------- Rachel Adams is a professor of English and American Studies at Columbia University, and the author of “Raising Henry: A Memoir of Motherhood, Disability, and Discovery. -- Avinash Shahi M.Phil Research Scholar Centre for The Study of Law and Governance Jawaharlal Nehru University New Delhi India Register at the dedicated AccessIndia list for discussing accessibility of mobile phones / Tabs on: http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in Search for old postings at: http://www.mail-archive.com/[email protected]/ To unsubscribe send a message to [email protected] with the subject unsubscribe. 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