ONLY those who have encountered the challenges of bringing up a child with Down’s Syndrome can truly appreciate the sacrifices and, at times, heartache of providing them with a good quality of life in a loving and secure environment. Of those families I know who have a child or adult with Down’s all would agree that the experience has enhanced their lives. These children are a gift. In this, Awareness Week 2019, many of us offer up thanks for the children and adults in our families who have Down’s Syndrome for the love and joy they bring to us.

Sometimes, depending on the extent of the social and emotional difficulties that already exist in some families, the task of making extra provision for a child with Down’s can prove too much. This is where a society such as our own, which aspires to provide care and support to all of its citizens, regardless of their special needs is supposed to rise to the challenge.

My 17-year-old niece, Ciara, who has Down’s Syndrome, was born with a cocktail of health challenges associated with this condition, including a hole in her heart. Predictably, and at various stages of her mum’s pregnancy the only advice coming from some medical staff was an abortion. The expert care and attention of other nurses and doctors though saw Ciara through the first few difficult years of her life while the love and dedication of her parents and her older brothers and sisters saw her realise her full, human potential. She has blossomed into a beautiful and gifted young woman who loves Little Mix and Ed Sheeran and who has represented her school and her country at international swimming events.

This is the point where I could quote you statistics about the increasing quality of life enjoyed by Down’s Syndrome people or about how, on average, they now have a higher life expectancy than before. This, though, would be to diminish the experiences of those whose Down’s has come with an assortment of other issues and where the outcomes haven’t been as happy. I can only talk about my family’s experiences with Ciara which, from the beginning, have been almost uniformly positive ones.

The biggest threat to this, though, came quite recently and from an entirely unexpected direction: the Catholic secondary school in England where, during her first three years there, she had enjoyed a very supportive and rewarding educational experience. She made progress in Maths, Science and English but, most importantly, she was happy in a small circle of friends and was included socially.

A change of headteacher saw this change drastically when he refused to consider her for entry into the upper school on the grounds that she couldn’t meet the entry criteria for sixth form in Maths and English. Appeals to the board of governors were met with the response that “funding” was the main issue. When it was discovered that “funding” would be provided by the local authority more obstacles were found to prevent her re-joining her friends at her local school of choice. Further, it was discovered that the so-called “entry criteria” was not being imposed on other students.

Even after an Education and Health Care Plan review stated that she should be included at this school a number of obstacles have been put in her way which her family believe are clear attempts to humiliate Ciara and to sicken them: she must repeat previous years; must leave at lunchtime on certain days and was then refused a return after the half-term break because a teaching assistant couldn’t be found. Following a legal letter from the local authority the school has now reluctantly agreed to let her return but she must not mix with her 6th year peers, even at lunchtimes.

Parents of Down’s Syndrome children all over the UK will recognise several aspects of this story. They arise from a refusal to recognise them as fully human or as being somehow less than fully-deserving of our public services. When we allow a person’s basic human dignity to be so easily stripped away due to disability, ill health and old age none of us will eventually escape the natural consequences of this.

During Down’s Syndrome Awareness weeks we all become sentimental on social media when photographs are posted of smiling, happy children surrounded by love and we duly pitch in with touching messages of support. Yet a curious dissonance exists here in our attitudes to people with Down’s Syndrome. We’re all happy to sign up to an agenda which supports their basic human rights to be treated equally and as fully human yet seem quite happy to have Down’s Syndrome effectively screened out of existence in our modern, inclusive and enlightened world.

The charity Don’t Screen Us Out has highlighted government figures indicating that 90% of babies who are prenatally diagnosed with Down’s Syndrome are aborted.

Based on the most recent figures for Down’s births, this is projected to result in a decline of 13% reported live births of babies with Down’s.

According to the charity, “these consequences would have a profound long-term effect on the population of the Down’s Syndrome community, and enable a kind of informal eugenics in which certain kinds of disabled people are effectively ‘screened out’ of the population before they are even born”.

This is not a debate about abortion, rather it’s one about who gets to decide what it means to be fully human and how much we erode the rights of those that society deems to be something less. If we can get to a situation where Down’s Syndrome is regarded as such an imposition on our nice, normal way of life that we are screening it out of existence then what are the care and spending implications for those Down’s Syndrome people who made it to birth? And once we start quantifying the human value of these, our brothers and sisters, sons and daughters, then when do we start coming for the aged, infirm and handicapped on grounds of cost and convenience?