Prenatal Screening: A Personal View

Paul Adeline (UK)

I am a person with learning disabilities, and I believe that any person with learning disabilities has the right to take part at a conference where doctors, surgeons, social workers, therapists and other professionals are talking about things which concern people with learning disabilities.

I am also worried that if organisers do not plan to include people with learning disabilities right from the start of planning for what is going to happen, organisations could be going against the spirit of the Human Rights Act.

In June 2003, a meeting was held by the International Downs Syndrome Screening Group at Regents College, London. The group was going to talk about screening for Downs Syndrome before the baby is born.

A number of people with Down's Syndrome wanted to present their perspective to the delegates and decided to put on a small demonstration in the grounds of Regents College. They then entered the lecture hall, and so disrupted the meeting. The police were called.

By the time the police had arrived, the conference organisers had agreed to let Anya Souza, 40, a woman with Down's Syndrome, speak to the delegates for 10 minutes.

The other people with Down's Syndrome were allowed to sit at the back of the hall.

These are some of the points Anya made:

I can't get rid of my Down's. But you can't get rid of my happiness. You can't get rid of the happiness I give others, either.

It's doctors that want to test pregnant women, and stop people like me being born.

Sometimes doctors want to sterilise us, prevent us from being born.

After the conference Anya told a Disability Now Extra reporter that she is against testing for Down's Syndrome, and that there should be more people with Down's Syndrome around.

Professor Howard Cuckle, a member of the International Down's Syndrome Screening Group's scientific committee agreed that the protesters had some good points, and he respected the rights of the protesters to express their views. He also said that the delegates were talking about "technical topics" and the conference was not the proper place for speakers to bring out personal matters. He said that they would have been entitled to attend the conference as paying delegates.

Professor Cuckle finished by saying that screening gives parents who might be expecting a child with Down's Syndrome enough information to decide if the pregnancy should carry on.

On the other hand, Anya thinks that young parents should know a lot more about what it's like to have a Down's Syndrome child before making a choice.

Anya points out that a Down's baby can give a lot of pleasure, and grow up to lead a full and happy life. It's important to give the baby lots of love, and attention, and a lot of support when he or she goes to school and in everyday life.

You can find out a great deal about Down's Syndrome from places like the Down's Syndrome Association, and get advice and support from other families who have children with Down's Syndrome.

This article was first published on the site in 2003. Reviewed in 2019, content continues to be relevant.  Paul Adeline died in March 2022 but his profound contribution to our understanding and awareness of intellectual disability over many years will be his lasting legacy.