A diagnosis of Down syndrome usually arrives before a baby is even born, and in much of the world, it is treated as a reason to end the pregnancy rather than the start of a life. One question that naturally follows is, "What exactly is Down syndrome?” Down syndrome is a genetic condition and not a disease. It is caused by an extra copy of chromosome 21, which takes place during cell division. This is usually a sporadic (random) event and not inherited from parents. People with Down syndrome have a few common physical signs that are often present at birth, which include a flat nose bridge, slanted eyes pointing upwards, a short neck, and small ears, hands, or feet. They may take longer to reach milestones such as walking, speaking their first word, or independent eating due to cognitive development challenges. Even with such setbacks, they are absolutely capable of going to school, holding jobs, falling in love, and living well into their 60s. Yet, sadly, across the world, the response to a prenatal diagnosis is often the same: termination. Despite living in a world with advanced knowledge, people with even small differences continue to be viewed differently. What we need to ask is whether the chromosome really is the problem or if it is our assumption.
Nowhere is this gap between potential and perception more visible than in Spain. A peer-reviewed study in the European Journal of Human Genetics found that across Europe in the years 2011 to 2015, an average of 54% of Down syndrome pregnancies ended in selective termination. In Europe, Spain has the highest reduction rate of 83%, placing it at one extreme of the spectrum compared with other European countries such as Malta, which has 0% reduction. During the same period, there were approximately 8,031 annual live births of children with Down syndrome in Europe. The research estimated that without this decision being made, that number would have been double, at approximately 17,331 births annually. This wide variation shows how much culture, screening access, and policy can shape outcomes that have nothing to do with biology. In Spain, prenatal screening is widely available, allowing expectant parents to learn about Down syndrome early in pregnancy. While these medical advances provide more information, they have also raised ethical questions about whether improved screening is leading to greater inclusion or fewer opportunities for people with Down syndrome to be born.
Iceland represents an even more extreme version of this pattern. Since the introduction of prenatal screening in the 2000s, nearly 100% of women in Iceland who receive a positive test for Down syndrome choose to terminate. As a result of this, Iceland now sees only 1-2 children born with Down syndrome per year. These births also occur because the screening tests, which are about 85% accurate, have a low-risk result. While Iceland has the highest termination rate, other countries also show high percentages, such as Denmark with 98%, France with 77%, and the United States with 67% who show a similar pattern. Kari Stefansson, a prominent Icelandic geneticist, suggests that these rates reflect “heavy-handed genetic counselling”, which means when the medical advice is not neutral and instead pressures parents towards ending the pregnancy and influences decisions that are not strictly medical. But not everyone agrees with this approach. Thordis Ingadottir, a parent of a child with Down syndrome in Iceland, advocates for full inclusion and asks society a difficult question: what kind of society do people actually want to live in? She points out that despite their diagnosis, people with Down syndrome can live full, healthy lives, often into their 60s.
The struggle is not only about who is born, but it is also about how society treats those who are already here. The Oxford Human Rights Hub talks about the promise of India’s RPWD (Rights of Persons with Disabilities) Act of 2016. The Act was meant to align India’s legal framework with the UN Convention on the Rights of Persons with Disabilities (CRPD). It significantly expanded protection by increasing recognition of disability categories from 7 to 21. It shifted from a purely medical definition of disability to a rights-based approach, viewing disability through social, environmental and relational factors and not just as a person’s condition. But sadly, even after 7+ years of the Act being passed, many Indian states have failed to properly implement its provisions. A major reason is that many states have not appointed a State Commissioner for Persons with disabilities, who are meant to monitor implementation and handle complaints. Special courts meant to adjudicate violations are also scarce at the state level, which weakens enforcement. Even the Supreme Court of India has had to issue repeated orders urging states to comply, but gaps still exist. In such a densely populated country, the lack of proper implementation makes it even more difficult for persons with disabilities to access the support and services they are legally entitled to.
Around the world, people with Down syndrome are qui proving these assumptions wrong. When we look at the movie Sitaare Zameen Par, which was released in 2025 and produced by Aamir Khan, it not only stars him but also features a cast of real actors with Down syndrome, and not professional actors playing the part. Gopi Krishnan Varma, who is a Malayalam actor, was one of them. He became the first lead actor with Down syndrome in India, which is a title recognised by the India Book of Records.
A few more people who should be recognised are Pablo Pineda, who is a Spanish actor and writer. He became Europe’s first person with Down syndrome to earn a university degree, which is a BA in Educational Psychology. Pablo also won the Concha de Plata award at the San Sebastian International Film Festival for his acting in the film “Yo, tambien”. He also got a chance to work as a teacher. Collette Divitto is an American woman with Down syndrome. She struggled to find a job even after graduating from college and despite her qualifications. So, she turned to something she had loved since childhood, which was baking and started her own company called Collettey’s Cookies. Collette is now the CEO of her own business, which ships worldwide, and she actively hires other people with disabilities and advocates for fair wages for disabled workers since federal law does not require minimum wages for some disabled workers. Finally, we have Karen Gaffney, who is an American swimmer, advocate and motivational speaker who has Down syndrome. She has completed long-distance open-water swimming. Karen has founded an organisation dedicated to promoting inclusion for people with Down syndrome. Together, these individuals show that a diagnosis of Down syndrome does not define a person’s potential or limit what they can achieve. Instead, their lives are often shaped by the opportunities, inclusion, and support they receive from the people and society around them.
Despite everything stacked against them, studies show that nearly 99% of people with Down syndrome surveyed describe themselves as happy. Perhaps that says more about society's assumptions than about the condition itself. The real barrier was never the extra chromosome, but the lack of inclusion, opportunity, and acceptance. True inclusion is not just about disability laws or medical advances, but about creating a society where every person is valued for their potential rather than judged by a diagnosis.
References
- Cleveland Clinic https://my.clevelandclinic.org
- European Journal of Human Genetics (Nature) https://www.nature.com
- CBS News (Iceland) https://www.cbsnews.com
- Oxford Human Rights Hub https://ohrh.law.ox.ac.uk
- BollywoodShaadis https://www.bollywoodshaadis.com
- Discover Walks Blog https://www.discoverwalks.com
- CBS News (Collette Divitto) https://www.cbsnews.com
- The T21 Journey https://thet21journey.com
- National Centre for Biotechnology Information (NCBI) https://pmc.ncbi.nlm.nih.gov