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New York Times Op-Ed Contributor Chris Kaposy, Dr. Kaposy is a bioethicist. My wife’s ultrasound turned up something abnormal in the baby’s heart — an otherwise innocuous feature that correlates with genetic conditions such as Down syndrome. A series of tests confirmed that our son indeed had Down syndrome. We were given the option of abortion, but my wife, Jan, already regarded him as our baby, and a few months later Aaron was born. The first days after the diagnosis were hard. We thought about our son’s future, and our future. We went through a period of grieving. But we soon came to accept that Aaron would have Down syndrome, and to accept him as a member of our family. By the time Aaron was born, it was a joyous occasion. Today, almost nine years later, Aaron is an affectionate boy with blond hair and a crooked smile. He is passionate about hockey (we’re Canadian after all) and about animals. If he could grow up to be anything, he would probably be a veterinarian. Many parents make a different choice. In the United States, an estimated 67 percent of fetuses with prenatally diagnosed Down syndrome are aborted. In Canada, the rate could be even higher, though there aren’t any reliable studies on it. This has become a front in the American abortion-rights debate, and bills have been passed in North Dakota, Ohio, Indiana and Louisiana (and introduced in Utah) that make it illegal for a doctor to perform an abortion because of a positive prenatal test for Down syndrome. My wife and I are pro-choice and oppose placing limits like these on abortion. Nonetheless, I wish more people would include children with Down syndrome in their families. For this to happen, we don’t need new laws; we just need more people to choose to have such children. I understand the emotional turmoil that a prenatal diagnosis can bring. But after parenting Aaron through difficulties and joys and seeing the curiosity and delight he brings to our lives, I wonder why more people do not choose to bring children like him into the world. People with cognitive disabilities are, of course, commonly subject to ridicule, even by political leaders. I don’t mean just President Trump — President Barack Obama once made an offensive joke about the Special Olympics (he apologized). People with Down syndrome have tried to counter bias against them by speaking out about how they contribute to their communities. But acceptance in our communities seems scarcely possible without acceptance into our families. Having a baby with Down syndrome may seem too demanding to some prospective parents. It may seem that those of us who choose to have children with Down syndrome are either irresponsible or saintly. From my experience, however, such parents tend to be utterly normal and levelheaded people. Parents of children with Down syndrome have written extensively about their lives and have contributed to many research studies, as have people with Down syndrome themselves. These sources tell us that the lives of people with Down syndrome tend to go well. Their families are as stableand as functional as those that include only children who aren’t disabled. So why is there such reluctance to have children with Down syndrome? One explanation shows up repeatedly when parents recount the early days after receiving their child’s diagnosis. They feel a sense of loss because they no longer dream that their child will get married, go to college or start a family of their own one day — in other words, that they will not meet the conventional expectations for the perfect middle-class life. In fact, some people with Down syndrome do accomplish those things. Nonetheless, hopes and dreams of perfection might be a strong motive for parents to choose abortion.
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Ožujak je mjesec u kojem se obilježava Međunarodni dan osoba s Down sindromom (World Down Syndrome Day). Datum 21. ožujka simbolizira 3 reprodukcije 21. kromosoma što je glavno genetsko obilježje osoba s Down sindromom. U zadnjih deset godina napravljen je pomak u obrazovanju djece s Downovim sindromom. Prije je bila rijetkost naći dijete s Downovim sindromom u redovnoj školi, no danas sve više djece je zahvaljujući ranoj intervenciji dobilo mogućnost učiti sa svojim vršnjacima u redovnom razredu po prilagođenom programu i uz pomoćnika u nastavi. Ovaj oblik školovanja se pokazao i u svijetu daleko najboljim. Dijete s Downovim sindromom dobiva mogućnost učenja, slušanja i napredovanja ne samo u socijalnim vještinama nego i u intelektualnom napretku. Djeca s Downovim sindromom su jako vrijedna, uporna i mogu puno više naučiti, spoznati nego što se mislilo i što se u nekim knjigama i danas može naći. Povećanim brojem djece u redovnim školama bilo kroz potpunu integraciju ili djelomičnu djeca/mladi s Downovim sindromom idu i u srednje škole, najčešće strukovne škole. Što konkretno možete napraviti? Ako želite pomoći onda idemo zajedno mijenjati svijet. Najbolje se svijet mijenja ako su naša djeca integrirana od malih nogu. Ako u vrtiću imate dijete s Downovim sindromom, druga djeca u vrtiću će ga prihvatiti, polako će ga prihvatiti i roditelji te druge djece. Ako imate dijete s Downovim sindromom u redovnoj školi, prihvatit će ga druga djeca u razredu, prihvatit će ga i roditelji te djece. Djeca u razredu će sigurno biti bolja i izrastat će u bolje ljude jer će svaki dan vidjeti što je to upornost, što je to trud, što je to boriti se sa svojim teškoćama, a biti raspoložen, nasmijan, spreman za učenje, za novo. A ta djeca će danas sutra biti ljudi koji će imati svoju djecu, koji će raditi, neki od njih će imati prilike učiti nove naraštaje, možda će netko učiti neko novo dijete s teškoćama, netko će imati prilike predlagati i mijenjati zakone, netko će zapošljavati ili imati prilike poticati zapošljavanje osoba s Downovim sindromom, a netko će se možda odlučiti posvojiti dijete s Downovim sindromom. Važno je da i kroz kampanje i kroz promjene koje smo naveli prvo gledamo da osobe s Downovim sindromom imaju iste potrebe kao i svatko od nas bio dijete, bio mlada ili odrasla osoba. Iste su socijalne i emotivne potrebe, iste su potrebe za punim i ispunjenim životom. Oni žele biti uključeni u zajednicu u kojoj žive i naravno žele biti korisni građani, a na nama je da im to i osiguramo i omogućimo. Granice su puno puta u nama, a ne u njima. Kao jedan od zadataka imamo i osvještavanje javnosti o svim poteškoćama i preprekama s kojima se susreću osobe Down sindromom kako bi mogle ostvariti svoje potencijale-mogućnost redovnog polaska u predškolske i školske ustanove, teškoće kod zapošljavanja, ostvarivanja prava na samostalan život,… Danijela Raič, bacc.occupational th.