11:59am June 5, 2014

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People With Down Syndrome Disrupt Screening Conference (June 6, 2003)

On May 19th, a group of people with Down’s Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents Collage in London. This is the first time people with Down’s Syndrome have made such a protest and is a major new step in the debate about genetics, eugenics and the rights of disabled people.

As a result of the protest, the conference organisers allowed Anya Souza to speak from the platform. Ms Souza, who is a trustee of the Down Syndrome Association, told the doctors that she opposes Down’s Syndrome screening and that people with Down’s Syndrome are people not medical problems. Her speech was warmly applauded by the conference delegates

The protesters consisted of three people with Down’s Syndrome, another disabled person with learning disabilities and their families and supporters. They had written to the conference organisers in advance and asked to speak, but were refused by the main organiser, Professor Howard Cuckle. It is unacceptable that doctors discuss better ways of preventing people with Down’s Syndrome being born, whilst excluding their voices from the debate. This runs directly counter to one of the main demands of disabled people: ‘Nothing about us without us’.

The protesters expect that their action will persuade the conference organisers to ensure a full debate at next years conference with proper representation of disabled people with learning difficulties. This should be the start of a national debate on prenatal screening.

In her speech, entitled 'Everything you ever wanted to know about Down’s Syndrome… but never bothered to ask’, Anya Souza said: I can’t get rid of my Down’s Syndrome. 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’s Syndrome, said: ….. I enjoyed watching the conference although I was a bit scared of what the conference people were saying. 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. We are what we are and ask our opinion.

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LDOnline

I remember when this happened.  Nobody expected that people with Down syndrome could even have an opinion on genetic screening, even though they’re more affected by it than most people.  When they weren’t allowed to speak the regular way, they barged in and made sure people listened.

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