'It is just one aspect of him' The changing attitudes to people with Down's Syndrome

Rob's uncle Neil has the genetic condition that 40,000 people live with in the UK

Anniversaries are the chance for us to reflect on the past and the changes which have taken place.

Recently we’ve marked 50 years since the partial decriminalisation of same sex relationships and a century since some women got the vote.

Well this past year my family have been marking a less high profile anniversary - my uncle Neil passing his 50th birthday.

Neil’s story is as important to our social history as as those better known milestones because it shows how far we have come in treating people like him.

He has Down's syndrome a genetic condition that 40,000 others in the UK also live with.

When Neil was born in the 1960s it was normal, perhaps expected for his parents to have him institutionalised.

Many babies with Down's Syndrome were.

There are plenty of recorded cases where mothers and fathers were advised not to take their newborn baby home and to forget about them. Some of those babies would never leave those institutions.

That culture came from the then view that a baby with Down Syndrome was a mistake and a personal tragedy. It was wrongly assumed people with it could not lead a productive life.

My grandparents wouldn’t contemplate the idea of Neil being taken away. They raised him like their four other children, but help was limited. There were no pamphlets, no guidance, they were just left to get on with it.

Neil wasn't able to go to school until he was seven years old

A baby born with the condition can expect some health issues and a degree of learning disability. It’s different for each person but most will need extra support.

Today we understand how important early intervention is to the development of a child with Down's Syndrome. They didn’t know that in 1967. Neil had no help and his communication and speech. It’s had an impact all his life.

That was one hurdle. Discrimination was another. The stares because he looked different, the comments of sorrow or regret from strangers, even the law had a role.

It is unthinkable now that a child could be denied an education because of a disability but it happened and within living memory.

Children like him could not go to school. The Education Act of 1944 deemed those with Down Syndrome “uneducable.”

Change began in the 1970s with the introduction of special educational schools. Neil was almost seven years old by the time he passed a school gate. Those key early years missed.

There are still problems now but much has changed.

Some parents fear a new test for the condition could lead to more terminations

Today a baby born now with Down's syndrome will get help and support.

Many will attend a mainstream school, some will work and lead independent or semi-independent lives.

Nothing is perfect but society has come a long way. However, some feel the NHS has been slow - in particular around how it talks about Down's Syndrome.

In a village hall full of toddlers in Abergavenny I met Lucy.

She didn’t know her girl Oti had the condition until she gave birth and immediately she noticed how her baby was being referred to.’

“They don’t latch on, they have heart conditions” she was told. “You’re just filled with this anxiety by the immediate language used by the health professionals.”

Lucy's daughter Oti

Also there is Tanika, an occupational therapist. Her young son Leo also has Down's syndrome and said she is still battles against the language used. “Quite often the terminology used is ‘this is a Down Syndrome child’ as opposed ‘this is Leo who also happens to have Down Syndrome’ she said.

Language, she argued, is more important than ever because of the new non-invasive test for Down Syndrome in pregnancy.

Read about the controversy surrounding NIPT

Tanika said the discussion around a positive result could be critical to the continuation of the pregnancy. She believes if it primarily focuses on the negative aspects, then it could lead a termination.

The NHS accepts language has needed improving and says it has overhauled the information given.

“We’ve worked hard in our documentation and information to use the language that charities have informed us about. We just need to ensure we consistently using that,” Sharon Hillier from Public Health Wales told ITV News.

Some fear the new test could roll the clock back others strongly disagree.

Things are still not perfect, there are still problems but society is not the same as it was in the 1960s.

Neil and others like him can’t tell their story. But for me, first and foremost, he is my uncle and Down's syndrome is just one aspect of him.

During our filming for Wales This Week, I also met Matthew.

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Matthew has also had some milestones to celebrate recently. He has been able to move out of his parents' house and with some support, is able to live independently. He also has two jobs - at a restaurant and at the National Museum of Wales. He told me he wants to be an "adult, independent man with Down's syndrome - work for a living, earn money ... enjoy life, and just go for it!