Bye, bye...?
Double standards
This morning, going through my messages I stumbled upon the “Reflections on the Nuffield Council’s report on NIPT” . The blogpost, written by Catherine Joynson, Assistant Director Nuffield council, deeply saddens me. There is something very disturbing about a bio-ethics council who disapproves of screening and termination based on gender and ‘minor’ disabilities, yet bends over backwards to justify using NIPT to initiate the selection for Down syndrome, which is according to the Nuffield council a ‘significant and medical condition or impairment’.
Nuffield appears blind for the progress made by people with Down
Ten years ago Down syndrome was portrayed as a condition with “only moderate learning difficulties and treatable physical problems”. However, the term ‘significant handicap’ has not been reviewed for 27 years.
In these years we have witnessed the emergence of people like Pablo Pineda, an actor who hold a University degree in edcuational psychology, Madeline Stuart, a model walking New York fashion week’s runway and many more celebrities. Life expectancy for a person born with Down increased with a whopping 456% to around 60 years, inclusive education has become the norm and jobs and independent living are still on the rise. The sky seems the limit.
However, now the Nuffield council suggests that Down syndrome should be perceived as severely life-limiting. “We believe the intrinsic characteristics of the condition or impairment [Down syndrome] can, in and of themselves, have significant effects on family life. The same, we believe, cannot and should not be said about being a girl.”
This statement denies all accomplishments of people with Down syndrome and is discriminatory of itself. Furthermore, the birth of any child, with all the love and responsibility it brings, is going to have a significant effect on family life.
Nuffield council determines who is expendable in British society
Under the false flag of ‘a woman’s freedom to choose’, the Nuffield council determines who is worthy of abortion (and life) based on their perception of the ‘seriousness’ of a genetic disposition.
First, while NIPT can detect, with reasonable accuracy, if a fetus has Down syndrome, it cannot predict how this will impact life. There is scientific consensus that environmental factors (education, lifestyle, a loving and supporting environment, etc.) greatly influence an individual’s health and well-being. This adds to an outlook during pregnancy that remains unclear. A decision to terminate therefore cannot be regarded as an ‘informed decision’.
Secondly; how a disability or -in the case of Down syndrome-, a naturally occurring variety in the human species, is perceived, is very personal.
Thirdly, disability does not necessarily lead to a significant, negative effect on family life. On the contrary, an American study on a large cohort found the presence of Down syndrome improved the overall feeling of happiness to a much higher rate than is seen in the 'typical' population. Family members have reported that the presence of Down syndrome has enriched their lives.
People with Down syndrome see their life as brilliant
Everyone is equal, but some are more equal than others
The Nuffield council agrees that men are equal to women and this includes the equal right to life. Why then, does their logic tragically change when Down syndrome is involved? If parents are told 'your baby has a cleft lip or palate', followed by 'you have a right to a termination', they will automatically assume it's something far worse than it is.
If women are given information on the joys of having a baby-girl followed by 'a right' to terminate this will nullify the positive information and stigmatize females. The idea that some lives should be considered ‘not worth living’ doesn’t magically disappear but continues after birth and takes root in all aspects of society.
The Nuffield council tries to save the situation by “urging the Government to meet its duties in providing disabled people with high quality specialist health and social care, and in tackling discrimination, exclusion and negative societal attitudes experienced by disabled people”.
In turn I want to urge the Nuffield council to start reading the (anonymous) comments left behind after articles hailing the benefits of screening for Down syndrome. Women like me, who have children with Down syndrome, are increasingly accused of being ‘irresponsible’ for placing a burden on our family and society. Society becomes less accepting of ‘preventable conditions’ because choice exists. Therefore women’s decisions are not equally supported.
The point is, while we are each free to judge a life with or without a disability, we live in a world where governments and authorities have the responsibility to protect the equal human rights of all.
‘Free choice’ is an illusion
Screening is formally offered as a ‘free choice’ but expectations, inclusion, education, support, etc. influence choices. In fact, cultural and societal attitudes may be the most important factor in a woman’s decision.
Improving the status of women in society has proven to be the most successful tool in curbing gender-selection in Asian countries. A ban on gender-selection, like the Nuffield council proposes, is very much part of creating a society where both men and women are equally valued.
The Nuffield report doesn’t respond to the issue of disability discrimination which campaigners from Don’t Screen Us Out have highlighted over the last year. It simply attempts to take the issue back under the false flag of ‘a woman’s right to choose’ and stops us from moving forward into a diverse society which accepts and includes people with disability on their own merit.
If the UK truly values a women’s reproductive freedom the discussion should not be about how to eradicate a group and ‘legally’ get away with it. It should be about how to create equality and better opportunities for everyone. And that includes people with Down syndrome.
Differences are normal
Renate Lindeman is mother of two wonderful children with Down, the spokesperson for Downpride and a representative of Saving Down syndrome. Downpride and LeJeune Foundation have taken the Dutch screening policy to the UN, calling the government initiated extermination of people based on their genes a violation of their human rights.
Please sign the petition to urge the United Nations to remind countries of their obligation to protect the inherent humanity and dignity of all human beings.