Florida Agency for Persons with Disabilities

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World Down Syndrome Day 2020: The Road to Independence

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In 1868, a majestic mansion called Normansfield on Kings Road in Hampton Wick, United Kingdom opened its doors to 19 children with disabilities. In the nineteenth century, it wasn’t unusual for wealthy families to pay to place such children in facilities and to leave them there for life. However, this facility was unusual, in that it required these families to agree to have their child privately educated, and this sprawling mansion was held to the highest standards of comfort and hygiene.

Soon after opening, it was expanded to include schoolrooms and a farm with stables and a garden. Residents were taught how to ride horses, clean stables, and grow fruits and vegetables. They learned crafts like weaving and how to make puppets, which they then used to perform puppet plays. This commitment to educating and nurturing the creativity of these children was revolutionary, as most doctors of the time believed that the people who lived in these facilities were unable to learn anything.

The founder, however, was determined to prove that this was not the case. Above all, he was committed to ensuring that individuals with mental and developmental disabilities were given every opportunity to lead a quality life.

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The story of Normansfield begins 22 years before it opened. In 1846, John Langdon Down had a life-changing experience while walking with his family through the fields around Devon in the UK. A sudden rainstorm forced the family to run in search of shelter, and they ended up at a nearby farm. Here, they were served tea by a girl with distinct facial features, who seemed unhappy and did not speak the entire time. This encounter affected Langdon Down, and, as he later wrote, he remained haunted by this girl and one question: “Could nothing for her be done?”

This question stuck with him for years afterward as he explains, “the remembrance of that hapless girl presented itself to me and I longed to do something for her kind.” This experience inspired John Langdon Down to study medicine. He was an excellent student and could have had an excellent academic career or a thriving private practice in London. However, he chose, instead, to dedicate his life to researching and describing various developmental disabilities and to improving the living conditions for those with these disabilities.

He began his medical career at a facility called Earlswood, where he worked as the Chief Physician. Here, he not only worked to improve the living conditions of Earlswood’s residents, but he was also a dedicated researcher. He became the first person to identify a specific group of patients with flat, broad faces, upward slanting eyes, and a fissured tongue — features that they shared with the young woman who continued to inspire Langdon Down. His research also generated the largest collection of clinical photography from the Victorian era, providing a visual record for a condition whose cause would not be discovered for nearly 100 years.

Even after leaving Earlswood, John Langdon Down maintained this commitment to understanding various conditions that would come to be known as developmental disabilities and to improving the quality of life for these individuals. This dedication ultimately led him to open a facility of his own. And armed with years of research and the vision of one girl who had forever changed his life, he founded Normansfield.

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In 1961, a letter written by a prestigious group of genetic experts was published in the Lancet, one of the world’s oldest and best-known medical journals. This letter called for a renaming of the condition whose features were first described by John Langdon Down nearly 100 years earlier, but whose cause had only recently been discovered. This letter came two years after researchers had discovered that this condition was caused by the duplication of chromosome 21. This letter was signed by numerous experts on genetic conditions – and by one Norman Langdon Down.

Norman Langdon Down was the grandson of John Langdon Down. However, when Norman Langdon Down signed this letter, he likely had another John Langdon Down in mind as well — his cousin, who was born with the very condition that their grandfather had dedicated his life to understanding. Norman had been approached by one of the other signatories on the letter, who had requested Norman’s permission to lend his family’s name to this condition. His signature indicated his consent, and in 1965 the World Health Organization declared that this condition would henceforth be officially known as Down syndrome.

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Since 2012, the UN has officially recognized March 21 as World Down Syndrome Day. This awareness day commemorates individuals with Down syndrome, but it’s also a perfect time to reflect on the progress that we’ve made in understanding Down syndrome and improving the conditions of individuals with it.

And it is in this spirit that we remember John Langdon Down, who was one of the earliest champions of independence for individuals with disabilities, including the condition to which he would ultimately lend his name. John Langdon Down was one of the first to demonstrate the learning capacity of individuals with developmental disabilities and to use this as an argument for their independence.

And this year’s theme, “We Decide,” builds on the work of John Langdon Down and countless others. This theme advocates for the decision-making rights of people with Down syndrome, arguing that “all people with Down syndrome should have full participation in decision making about matters relating to, or affecting, their lives.” This year’s theme encourages all of us to follow the example of advocates like Langdon Down and to not only celebrate trailblazers like John and Norman Langdon Down, but also to celebrate the many individuals with Down syndrome and continue supporting their independence.

For more information about Down syndrome, check out this blog post. You can also join us in celebrating this year’s theme by reading up on the decision-making rights of individuals with developmental disabilities here.

You can find more information about John Langdon Down and his contributions here and here.

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