{"id":626,"date":"2008-07-08T11:57:00","date_gmt":"2008-07-08T11:57:00","guid":{"rendered":"http:\/\/agenciainclusive.wordpress.com\/2008\/07\/08\/mirando-no-utero-sindrome-de-down-deficiencias\/"},"modified":"2008-07-08T11:57:00","modified_gmt":"2008-07-08T11:57:00","slug":"mirando-no-utero-sindrome-de-down-deficiencias","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=626","title":{"rendered":"Mirando no \u00fatero, s\u00edndrome de Down, defici\u00eancias"},"content":{"rendered":"

Valerie Karr, de Sea Cliff, \u00e9 candidata a PhD no Teachers College da Universidade de Columbia, e estuda as perspectivas internacionais sobre os direitos das pessoas com defici\u00eancia.<\/p>\n

7 de julho de 2008<\/p>\n

No fim de semana passado na minha sorveteria preferida eu conheci um ador\u00e1vel garotinho de 4 anos chamado Sully. Ele tinha olhos azuis brilantes e inquisitivos, um sorriso feliz e, julgando por seus tra\u00e7os, s\u00edndrome de Down.<\/p>\n

Poucas semanas antes eu havia lido uma estat\u00edstica estarrecedora: 92% dos fetos diagnosticados com s\u00edndrome de Down est\u00e3o sendo abortados. Normalmente, eu n\u00e3o me debru\u00e7o sobre o tema do aborto, mas esse n\u00famero me veio \u00e0 mente quando eu olhei para o Sully. Com apenas 8% de prov\u00e1veis pais de beb\u00eas com s\u00eddrome de Down optando por ter o filho, Sully pode crescer sem colegas como ele com quem interagir ao longo de sua vida. De alguma maneira n\u00f3s estamos dizendo que as vidas de crian\u00e7as com s\u00edndrome de Down valem menos do que aquelas que chamamos de crian\u00e7as normais.<\/p>\n

Decididamente, os custos econ\u00f4micos de criar uma crian\u00e7a com s\u00edndrome de Down pode ser oneroso. A estresse emocional pode causar tens\u00e3o entre os pais. Pode haver complica\u00e7\u00f5es m\u00e9dicas s\u00e9rias. Na verdade, numa pesquisa conduzida por Brian Skotko da Escola de Medicina de Harvard, 3000 m\u00e3es que receberam a not\u00edcia de que seus filhos tinham s\u00edndrome de Down relataram que os m\u00e9dicos se expressaram de forma negativa a respeito de sua escolha de prosseguirem com as gravidezes.<\/p>\n

Algo profundo e perturbador est\u00e1 no \u00e2mago deste dilema. Se os pais e at\u00e9 os m\u00e9dicos depreciam a vida de uma crian\u00e7a com s\u00edndrome de Down, que perspectiva ela ter\u00e1 em sua vida e como ser\u00e1 julgada pela sociedade em geral?<\/p>\n

\u00c9 claro que a taxa de 92% apenas diz respeito \u00e0quelas mulheres que se submetem a exame pr\u00e9-natal para rastrear defici\u00eancias. A preval\u00eancia de crian\u00e7as nascidas com s\u00edndrome de Down ainda n\u00e3o caiu muito nos Estados Unidos (\u00e9 aproximadamente de 1 em 733), o que quer dizer que muitas gr\u00e1vidas n\u00e3o est\u00e3o fazendo esses testes. Mas o exame pr\u00e9-natal tornou-se mais seguro e corriqueiro entre mulheres mais jovens, e agora mais de 70% delas t\u00eam se submetido a eles. Ent\u00e3o, a quest\u00e3o \u00e9 o que essas mulheres, esses pais, e m\u00e9dicos far\u00e3o quando tiverem a informa\u00e7\u00e3o sobre a defici\u00eancia de um beb\u00ea antes dele nascer? Na velocidade que se caminha, n\u00f3s eventualmente vamos exterminar as crian\u00e7as com s\u00edndrome de Down da sociedade.<\/p>\n

E o mundo vai perder a oportunidade de experimentar esses maravilhosos e generosos membros de nossas comunidades. Sim, frequentemente pais de crian\u00e7as com s\u00edndrome de Down vivem um sentimento de luto e choque quando recebem o diagn\u00f3stico, mas, mais tarde, esses pais expressam o prazer e a alegria que seu filho trouxe para a fam\u00edlia, e o otimismo que sentem acerca de seu futuro. Crian\u00e7as com s\u00edndrome de Down brincam com os amigos, participam de programas de esporte, se formam no ensino m\u00e9dio e podem viver independentemente na comunidade com os apoios adequados.<\/span><\/p>\n

Hoje, existem listas de espera de pessoas que querem adotar crian\u00e7as com s\u00edndrome de Down nos Estados Unidos e em outros pa\u00edses. A Sociedade Nacional de S\u00edndrome de Down tem trabalhado junto a profissionais de sa\u00fade para tornar todos os aspectos de se ter um filho com s\u00edndrome de Down \u2013 inclusive os positivos \u2013 conhecidos pelos pais quando eles recebem o diagn\u00f3stico.<\/span><\/p>\n

A s\u00edndrome de Down n\u00e3o \u00e9 a \u00fanica defici\u00eancia que vem sendo atacada no \u00fatero. Recentemente um Laborat\u00f3rio de Gen\u00e9tica franc\u00eas identificou uma regi\u00e3o no cromossomo n\u00famero 16 que aparentemente est\u00e1 ligado ao autismo. Esse estudo imediatamente levantou quest\u00f5es sobre disponibilizar exames pr\u00e9-natal para autismo. Se as estat\u00edsticas de s\u00edndrome de Down indicarem alguma coisa, isso pode representar uma nova onda de aborto relacionado \u00e0 defici\u00eancia.<\/span><\/p>\n

Esses abortos levantam quest\u00f5es dolorosas normalmente relegadas \u00e0s esferas religiosas ou filos\u00f3ficas. N\u00f3s s\u00f3 queremos crian\u00e7as \u201cperfeitas\u201d? A sociedade valoriza mais pessoas \u201cnormais\u201d do que as que t\u00eam defici\u00eancia? A igualdade inalien\u00e1vel entre todos os seres humanos \u00e9 uma fraude?<\/span><\/p>\n

Por ironia, o mundo aparentemente baniu a discrimina\u00e7\u00e3o contra pessoas com defici\u00eancia atrav\u00e9s de leis que v\u00e3o desde o precursor Ato dos Americanos com Defici\u00eancia at\u00e9 a recente Conve\u00e7\u00e3o da ONU sobre os Direitos das Pessoas com Defici\u00eancia. Parece que n\u00f3s evoluimos muito, mas talvez o avan\u00e7o n\u00e3o seja t\u00e3o grande. O movimento de eugenia no come\u00e7o dos anos 1900 foi o precursor do genoc\u00eddio nazista germ\u00e2nico de pessoas com defici\u00eancia. Noventa e dois por cento \u00e9 virtualmente extermina\u00e7\u00e3o, sancionada por m\u00e9dicos e pais. \u00c9 um n\u00famero que reflete a atitude mais ampla da sociedade a respeito das pessoas com defici\u00eancia.<\/span><\/p>\n

N\u00f3s resolvemos nos tribunais, por enquanto, a quest\u00e3o do aborto. Permanece sendo uma escolha da mulher. Mas essa escolha fica comprometida se as comunidades menosprezam seus deficientes. A vasta maioria destas vidas s\u00e3o ceifadas dentro do \u00fatero, condenadas pelo status de disponibilidade, apesar do fato de que crian\u00e7as como Sully podem viver vidas longas, felizes e enriquecer a todos a quem tocam. Reconhecimento da igualdade entre todas as crian\u00e7as \u2013 inclusive crian\u00e7as com defici\u00eancia \u2013 \u00e9 o primeiro passo para legitimar o direito da mulher a uma escolha verdadeira e a uma aceita\u00e7\u00e3o mais ampla por parte da sociedade dos direitos das pessoas com defici\u00eancia.<\/span><\/p>\n

Tradu\u00e7\u00e3o – Patricia Almeida – Ag\u00eancia Inclusive
\n<\/span><\/p>\n

Nota da tradutora: O aborto \u00e9 permitido em v\u00e1rios estados americanos.<\/span><\/p>\n

http:\/\/www.newsday.com\/news\/opinion\/ny-opxxx5755254jul07,0,5073863.story<\/span><\/span><\/a><\/p>\n

Targeting the womb, Down syndrome, disabilities<\/p>\n

BY VALERIE KARR | Valerie Karr, of Sea Cliff, is a PhD candidate at Teachers College, Columbia University, who studies international perspectives on the rights of persons with disabilities.<\/p>\n

\n
July 7, 2008 <\/dd>\n<\/dl>\n

Last weekend at my favorite ice cream shop, I met an adorable 4-year-old boy named Sully. He had bright blue, inquisitive eyes, a happy smile and, judging from his telltale facial features, Down syndrome.<\/p>\n

Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted. I don’t normally get overly exercised about the issue of abortion, but this number struck me as I looked at Sully. With only 8 percent of prospective Down parents choosing to have their child, Sully may grow up with no peers to interact with in his life. Somehow, we are saying the lives of children with Down mean less than those of so-called normal children.<\/p>\n

Admittedly, the economic costs of raising children with Down can be onerous. The emotional strain can cause rifts between parents. There can be serious medical complications. As a matter of fact, in a survey conducted by Brian Skotko at Harvard Medical School, 3,000 mothers receiving the news that their child would have Down syndrome reported that physicians expressed negative views about them continuing their pregnancies.<\/p>\n

Something profound and disturbing lies at the heart of this dilemma. If parents and even doctors so devalue the life of a child with Down, what prospects do they have in their lives and in the judgment of society at large?<\/span><\/span><\/p>\n

\n

Of course, the 92 percent abortion rate pertains only to those women having prenatal testing for disabilities. The prevalence of children born with Down syndrome has not actually seen a dramatic decrease in the United States (it is approximately 1 in 733), which means that many pregnant women are not getting these tests. But prenatal testing has become safer and more common among younger women, and now more than 70 percent are undergoing screening. So the question is what will these women, parents and doctors do, as information about unborn children’s disabilities becomes more readily available? At the current rate, we will eventually exterminate children with Down from society.<\/p>\n

And the world will miss out on the opportunity to experience these wonderful and giving members of our communities. Yes, often many parents of children with Down syndrome experience grief and shock when given the diagnosis, but upon follow-up, parents expound on the joys and happiness their child has brought to the family, and the optimism they feel for their child’s future. Children with Down syndrome play with peers, participate in sports programs, graduate from high school, and can live independent lives in the community with proper supports.Today, there are waiting lists of parents wanting to adopt children with Down syndrome in the United States and internationally. The National Down Syndrome Society has been working closely with health-care professionals to make all aspects of having a child with Down syndrome – including the positive ones – known to parents when they are presented with the diagnosis.<\/p>\n

<\/span><\/p>\n

Down syndrome is not the only condition that is targeted in the womb. Recently a French Genetics <\/span><\/p>\n

Lab identified a region on chromosome 16 that is apparently linked to autism. This study immediately raised questions about the availability of prenatal testing for autism. If the Down syndrome figures are any indication, this could represent the next wave in disability-related abortion.Such abortions raise painful questions normally relegated to the religious or philosophical spheres. Do we want only “perfect” children? Does society value “normal” people more than those with disabilities? Is the unalienable equality inherent in all humans a fraud?<\/p>\n

Ironically, the world seems to have legislated away discrimination against people with disabilities, from the landmark Americans with Disabilities Act to the recent UN Convention on Rights of Persons with Disabilities. We seem to have come a long way, but maybe it’s not so far at all. The Eugenics movement in the early 1900s was a precursor to Nazi Germany’s genocide of persons with disabilities. Ninety-two percent is a virtual extermination, sanctioned by doctors and parents. It’s a number that reflects the broader society’s attitude toward persons with disabilities.<\/p>\n

<\/span><\/p>\n

We have resolved in the courts, for the time being, the issue of abortion. It remains a woman’s choice. But that choice is demeaned if communities devalue the life of its disabled. The vast majority of these children are handicapped in the womb, condemned by their disability to disposable status despite the fact that children like Sully can live long, happy lives that enrich everyone they touch. Awareness of the equality of all children – including children with disabilities – is the first step to legitimizing a woman’s right to true choice and to the broader acceptance in society for the rights of persons with disabilities.<\/span><\/p>\n


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