Is Down syndrome 'tragic' when they die - or when they live?

Ann Farmer
January 8, 2020
Reproduced with Permission

Tommy Pilling died on New Year's Day at the age of 62 after catching the coronavirus. In 1995 he made headlines when, as a man with Down syndrome, he married Maryanne, who also has DS – the first such marriage in Britain.

After having sheltered for 10 months, he was admitted to hospital with a chest infection. It is believed that he contracted Covid while there.

Tommy and Maryanne lived independently for 25 years. "Our beautiful Tommy peacefully passed … after a battle with covid pneumonia," Ms Newman wrote on the couple's Facebook page on Monday . "Thank you for showing me what unconditional love was, I will remember your beautiful ways forever, your pure heart, your love of music, Elvis, your dancing. Your positive attitude and how you appreciated the small things. Thank you for making Maryanne so happy."

With improved care, people with DS are living longer than ever before. The life of Tommy Pilling showed that with appropriate support they can have happy and fulfilled lives. Despite this, and other stories of the joy brought to families by such individuals, increasing efforts are made to kill them before birth , with doctors offering gloomy medical prognoses and abortion up to the very last minute.

The surest way to ensure that a gloomy medical prognosis is not proved wrong is to kill the patient. So, far from these improvements prompting a rethink on the "search-and-destroy" approach, efforts to eliminate them before birth have accelerated.

The tragedy of people with DS, as far as governments and some medics are concerned, is not their early deaths but their increased longevity. How else can one explain the repeated offers of abortion to affected couples? These have resulted in over 90 percent of such pregnancies being aborted. The introduction of an "improved" non-invasive prenatal screening test has already reduced the number of such babies born in the UK by 54 per cent.

In an age that allegedly prioritises equality and diversity, it will be interesting to see the outcome of a legal challenge now pending, brought by Heidi Anne Crowter, a young woman with DS, against the discriminatory nature of the abortion law, which allows those with disabilities to be aborted up to birth, when the abortion limit for non-disabled babies is "only" 24 weeks.

"When my solicitor contacted the department of health," she says, "they replied denying the claim and said that abortion is a matter of choice for the mother and that there is nothing wrong with the law! I do think there is something wrong with it, I think people should see the person behind the extra chromosome!"

(She married a man with DS in June in a modest, socially-distanced event. "It wasn't the wedding we planned, but it was the greatest day of my life," she told the media .)

Tommy Pilling made the headlines when he tragically died, but thousands more are dying from the most unnatural of causes – being killed; it is even more tragic when those with DS are considered worthy only of pre-birth euthanasia. It is simply assumed that they would rather not live. Practically speaking, it is so much easier to kill such individuals when they are in what is now the most unsafe place in the world - the womb - especially when it can be portrayed not as a callous but as a compassionate act.

As a person with DS, Tommy was burdened with the dark view that he would be better off dead. But he led a happy and fulfilled life and showed the world that this is true of each and every one of us. Although he had a negative label to live down, he succeeded - something he would not have been able to do had he not actually been allowed to live.