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Down Syndrome Advocates Protest At Pre-Natal Screening Conference
By Dave Reynolds, Inclusion Daily Express
May 30, 2003

LONDON, ENGLAND--A group of activists with Down syndrome and their supporters disrupted a May 19 conference on prenatal screening in an effort to launch a national debate on the practice of screening fetuses for Down syndrome.

Down syndrome is one of a number of "birth defects" that prenatal screening methods attempt to detect. Doctors test for it in order to give the pregnant mother information to decide whether to carry her pregnancy to full term or to abort the fetus.

According to a media release from Human Genetics Alert, which calls itself an independent public interest watchdog group, the protesters included people with Down syndrome and mental retardation, along with their families and supporters. They had written in advance to the organizers of the International Down Syndrome Screening Conference at Regents College to speak to the doctors in the audience, but were refused.

Following the disruption, conference organizers finally allowed Anya Souza, a trustee of the Down Syndrome Association, to speak from the platform. She told the crowd that she opposes prenatal screening for Down syndrome.

Souza said that it is unacceptable for doctors to talk about preventing people with Down syndrome being born, while excluding their voices from the debate.

"I can't get rid of my Down’s Syndrome," Souza told the conference attendees. "But you can't get rid of my happiness. You can't get rid of the happiness I give others either. It's doctors like you that want to test pregnant women and stop people like me being born. You can't abort me now can you? You can't kill me...sorry!"

"Together with my family and friends I have fought to prevent my separation from normal society. I have fought for my rights. ….. I have the right to a job, to services when necessary, to a decent standard of living, to know about my medical problems, to speak my mind, to make choices about my friends, whether to have sex, and so on. To do this you have to be independent when you grow up and not get separated from society"

"I may have Down’s Syndrome, but I am a person first."

Kitty Gilbert, who also has Down syndrome, said: "I think screening pregnant mothers with Down's Syndrome babies is wrong. They are wanting their offspring to be able to enjoy their world around them and have endless happiness. I for one gave my mum pride and joy and I will continue to do so. I think that we should be treated fairly and equally, not being getting rid off because there is so much more in life that we can do."

The protesters said they expect their action will persuade conference organizers to have a full debate over the issue at next year's conference, and that people with Down syndrome and other disabilities will be included.


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