good one, very good one! On 10/31/13, Shireen Irani <shireen....@gmail.com> wrote: > 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.. >
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..
