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Before my son, Tom, was even a week old, various medical professionals had expressed sorrow that he had “slipped through the net”. They told me that my life would never be the same, and questioned my antenatal screening choices. They even felt compelled to tell me what my precious new born son wouldn’t be able to do: he’d never play football for England, if he were ever able to play football at all; he’d not be able to go on a trampoline; and that he’d be a burden to his then 3-and-a-half-year-old sister, Emily. I was also overwhelmed with potential medical complications and given some very outdated literature; an appointment with a social worker was made to discuss whether to have Tom adopted. And when my community midwife visited, she consoled me as if my baby had passed away.
This negativity and fear was all because Tom had arrived with a little extra: an extra copy of his 21st chromosome. Tom has Down syndrome, a genetic difference that in the United Kingdom pregnant women are encouraged to screen for, and for which 90% of women go on to choose termination. And to be honest, I’m not surprised so many women do; not because of the reality of living with Down syndrome, but because of the fear and prejudice that exist, the medical narrative, low expectations and coercion that prevail.
Our mainstream education system often fails those with a learning disability, there are extremely few employment opportunities and, in general, the level of ambition and expectation for folk with learning disabilities is at rock bottom.
While we have become a far more tolerant and inclusive society in so many ways, ableism and discrimination towards those with Down syndrome and other learning disabilities persist—and have gone unchallenged for too long. Antenatal maternity services have evolved to a point where Prof Robert Winston observed, “Modern medicine has failed to recognise the potential for babies with Down syndrome; modern obstetrics has become a search and destroy mission”. When Dr Liam Fox MP presented his Private Members’ Bill in British Parliament, since becoming the Down Syndrome Act 2022, he spoke of a desire to end the stigma towards those with Down syndrome.
As a society, we have become accustomed to measure people’s worth by their academic ability, and to consider those who are perceived as less able as inferior. Furthermore, having a learning disability is often derided and the butt of too many supposed jokes. There is often an arrogant attitude—generally fuelled by ignorance and compounded by discrimination—that having a baby with Down syndrome is a problem and should be avoided. It is only in recent years in the United Kingdom that the institutions where people with learning disabilities were incarcerated have all closed. Our mainstream education system often fails those with a learning disability, there are extremely few employment opportunities and, in general, the level of ambition and expectation for folk with learning disabilities is at rock bottom.
Read more on the Forum Network: Shifting Mindsets: How Embracing Neurodiversity Can Benefit Us All by Elisabeth Wiklander, Cellist and Neurodiversity Advocate, London Philharmonic Orchestra
Prize-winning cellist and autism advocate Elisabeth Wiklander explains how neurodivergent people and their neurotypical allies can complement each other, harness their differences and challenge harmful stereotypes to hold the door open for the next generation of unique minds.
Tom was the first person I met with Down syndrome. He has taught me more than anybody else I know. The greatest lesson being the simplest: love conquers all. Ironically, Tom is the least judgmental person you will ever meet; he takes people at face value, has no preconceived views or discriminatory attitudes but rather cracks on and enjoys his life to the full. He is kind, witty, generous and considerate. He is studying to become a fitness coach, and has wanted to grow a beard and manbun, way before meeting the wonderful coach Joe Wicks who he was lucky enough to record a one-to-one training session with! I know one day he will make a very lucky woman a wonderful husband. I learnt long ago not to compare him to others, with and without Down syndrome. He dances to his own tune and as if no body’s watching—it’s a very refreshing and satisfying outlook.
The challenges of parenting someone with Down syndrome are generally caused by society and systems, and rarely by the person themselves. When Tom was a baby, I yearned to have an insight, an understanding of what our lives would look like. I feared isolation, rejection, a life negatively overwhelmed and restricted by Tom having Down syndrome. We live in a society that subliminally yet blatantly leads us to believe that Down syndrome is something to be feared and to be avoided. There is so much unconscious bias in medical language—risk, disorder, abnormality, problem, defect—and the assumption to terminate when a baby is diagnosed as having Down syndrome sets the tone. Expectant parents are often overwhelmed with medical worries and pressured to consider their options, and so I understand why nearly all women terminate. I completely respect a woman’s choice to terminate a pregnancy, but it angers me that at a time when accurate contemporary information and meaningful support are required, misinformation and coercion often prevail. I passionately believe expectant parents deserve better, and this is a fundamental objective of what Down Syndrome UK aims to achieve.
I now know the truth about parenting a wonderful young man with Down syndrome. A baby I rejected at birth but who has gone on to teach me the true meaning of parenting: unconditional mutual love.
The goal set up some twenty years ago of making disability policies pro-active and employment-oriented has not been achieved. To learn more, read also the OECD report on Disability, Work and Inclusion
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