All campaigners must respect people with Down syndrome

People with Down syndrome should not be used as an emotive and overly simplistic focus for argument in this referendum, writes Pat Clarke.

In January of this year, Down Syndrome Ireland issued a statement respectfully asking both sides in the forthcoming referendum campaign to stop exploiting children and adults with Down Syndrome in order to promote their views.

A number of posters and leaflets featuring the faces of children with Down syndrome were, for the most part, taken down in response to this request.

But, now, a new campaign has been launched which again places people with Down syndrome at the centre of this debate.

No other group in society, no other disability, has been singled out in this way.

The reason Down syndrome receives disproportionate attention is in part because of the visibility of the condition, but it’s also because of patronising stereotypes that portray people with Down syndrome as particularly loveable, and therefore of particular value to society.

Using people with Down syndrome in this way is highly simplistic and plays to sentimentality; it’s also deeply upsetting to many people with the condition and their families.

The question is why Down syndrome continues to be used as a focus for a wider issue of which it is only a very small and complex element.

A case in point is the issue of prenatal testing for Down syndrome and the numbers of women who travel abroad for termination as a result of those tests.

This issue has been the subject of much attention in the past week on the national airwaves and in the press.

Yet again, Down syndrome has been singled out as a focus for discussion.

And, furthermore, the sensibilities of people with Down syndrome and their families have been exposed to a highly charged and emotive debate. No other disability or condition has been singled out in this way.

As a proportion of the total number of women travelling abroad for terminations every year, the numbers of women seeking terminations following screening for Down syndrome are relatively small.

All we know of them are the statistics; we know nothing of the personal or medical context that may have informed their decision.

And while the emphasis so far has been on the number of women who chose to terminate their pregnancy, it’s equally important to note the number who chose not to.

To focus on one set of figures and ignore the other is a disservice to those women, and their families, who received the news that their baby had Down syndrome and still chose to continue with the pregnancy.

Campaigners for a no vote in this referendum have argued that the introduction of a more liberal abortion regime will result in the disappearance, from society, of people with Down syndrome.

A voluntary national register is currently being compiled to record the number of births year by year of babies with Down syndrome, but there is no evidence that the number is declining.

The continuing challenge is to ensure that each one of those babies goes on to participate fully in society and to receive the support they need.

Down Syndrome Ireland has been working for many years to achieve rights and services for people with the condition, with considerable success, but there’s still a long way to go.

Statistics show 80% of children with Down syndrome now attend mainstream schools, but those schools still have to fight for adequate resources.

More and more people with Down syndrome are in employment, but many others are denied access to the workplace.

And for all the talk of valuing them, this state doesn’t make life easy for people with Down syndrome.

I have a son with Down syndrome.

David is thirty-seven years old. He has a job. He’s also a voter. David has exercised his franchise at every opportunity since he turned 18. He is fully aware of the debate about repealing the Eighth Amendment and has discussed it with his sisters.

And like any other citizen, David has the right to form an opinion on the forthcoming referendum and to vote for one side or the other as he sees fit.

As the date of the referendum approaches, I would respectfully ask, again, that people with Down syndrome and their families are given the space that every citizen deserves to exercise their franchise on this most complex of issues without being used as an emotive and overly simplistic focus for argument.

Pat Clarke is president of the European Down Syndrome Association, vice-president of the European Disability Forum and a former chief executive of Down Syndrome Ireland.

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