a wonderful piece. u truely deserve special thanx for bringing to light such diverse nuances of disability with such beautiful pieces of writing on these forums. keep up the great work. thank u avinash.
On 10/31/13, avinash shahi <shahi88avin...@gmail.com> wrote: > “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/accessindia@accessindia.org.in/ > > To unsubscribe send a message to > accessindia-requ...@accessindia.org.in > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > Disclaimer: > 1. Contents of the mails, factual, or otherwise, reflect the thinking of the > person sending the mail and AI in no way relates itself to its veracity; > > 2. AI cannot be held liable for any commission/omission based on the mails > sent through this mailing list.. > 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/accessindia@accessindia.org.in/ To unsubscribe send a message to accessindia-requ...@accessindia.org.in with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list..
