Mary Langdon Down: the forgotten Down in Down syndrome

You probably know that Down syndrome is named after John Langdon Down, the 19th-century Cornish doctor who first described the condition. He came to see Down syndrome as a separate entity after working with the residents of Earlswood, a Surrey institution for people with intellectual disabilities, and then later at Normansfield, a private facility he established himself in 1868. Except of course, he didn’t establish it all by himself. As with so many historical figures whose names we have come to know, there was an equally significant but unremembered woman contributing alongside him. Today, I’m going to introduce you to Mary – the forgotten Down in Down syndrome.

Mary Crellin married Langdon Down two years after his appointment to Earlswood, the first establishment in England designed specifically for people with intellectual disabilities. Although such institutions were a far cry from what we might recognise as a good option today, they were a vast improvement on the workhouses and asylums that preceded them. For the next forty years, beginning with their marriage in 1860 until her death in 1901, Mary Langdon Down worked - unpaid and seldom recognised - to improve the lives of people with what we now call Down syndrome.

To begin with, she worked in the schoolroom, educating those whom the wider world had deemed ‘uneducable’. She also played a key role in the developments Langdon Down is now celebrated for, such as the banning of harsh corporal punishments, the provision of activities, training, and access to the arts. We don’t know much about what the ‘entertainments’ facilitated by Mary and John might have been like, but we do know that Mary wrote sections of concerts, and facilitated the creative expression of staff and patients alike. According to David Wright, the author of Downs: the history of a disability, Mary “played a central role in the smooth operation of the Earlswood Asylum” and “was often seen counselling mothers of children who had recently been admitted”.

Mary was at the centre of the somewhat murky circumstances leading to the family’s departure from Earlswood, and the subsequent establishment of Normansfield. Around 1867, Mary began to supervise two of the wives of her husband’s staff with the private care of some patients who had been brought to Earlswood. These staff members were remunerated by Down without the Board’s knowledge at first, presumably with the funds that were being paid by the families in the private arrangement. She also took charge of some private residents herself. Not only was this done without the Board’s knowledge, but it was technically illegal at the time, as all people with disabilities being looked after for a charge had to be reported to the national inspectorate, and none of these private patients had been.

The Board eventually did find out, and Langdon Down resigned from Earlswood. Having been there ten years, Mary and John had gained enough experience to set up their own establishment. They received the licence for Normansfield in 1868, a location now known as the Langdon Down Centre.

Unusually for the time, Normansfield was licensed to Mary rather than to John. The license stated that Mary “devotes her whole time to the management of the Institution”. She continued to do so for over 30 years until her death. When she passed away, her two surviving sons, Reginald and Percival, took over the management of Normansfield, both of whom had become medical doctors. Throughout that period (1868-1901), Mary was responsible for the entire administration of Normansfield, and its dozens of residents and staff. In this role, her talents for pastoral care, management, and education were able to fly. At its peak, 168 residents and 88 staff came under her purview. She also took charge of correspondence between the centre and the parents and families of its residents which must have been a mammoth job. Surviving letters to Mary from the families of residents, ask for provisions to be made for individual needs and personalities.

Mary had four children, the two mentioned above, a daughter, Lilian who died at the age of two, and Everleigh. Everleigh died as a young man in circumstances involving his brother, Reginald, which were described by a later inquest as accidental. We don’t know a lot about what Mary was like as a parent, and how she coped with the age-old parental dilemma of balancing children with your own needs and passions. By the 1901 census, her two sons both had live-in maids and domestic servants, but this was following decades of professional success from their parents establishing them in high status careers, and we know things weren’t always as well-furnished for Mary.

When Everleigh and Lilian were born, they were living in a three-room space within the Earlswood Asylum. A little while later, a second bedroom was added to the space. Tragically, their only daughter Lilian’s died at the age of two, likely as a result of a viral infection. It was the kind of childhood illness that she may well have survived today, but in Victorian England, up to a third of children died before their fifth birthday. This must have been an extraordinarily difficult time for Mary and John, with the pressures of their work continuing (there is no indication that they stopped at all), their toddler son to look after, and their own grief to cope with. Lilian’s tombstones reads “In ever loving remembrance of a dear little Lilian who departed this life June 1st 1865 age 2 years. Happy soul to the sight of Jesus gone”. By the following year, Reginald was born, and it was with a two-year-old and a four-year-old in tow that Mary left Earlswood to establish Normansfield with her husband, after a decade of transformative leadership.

It is at Normansfield that Mary’s artistic side really came to life. The employment of staff required that they be able to “sing, act, or play a musical instrument”. The Langdon Downs created a lavish theatre there which is still in use today, hosting concerts and performances, and as a popular film location for productions such as Downton Abbey. In addition, sports, occupational training, workshops, and elocution training (the forerunner to modern-day speech and language therapy) were all part of living at Normansfield.

After her husband’s death but before her own, in an almost unbelievable coincidence, Mary became a grandmother to a child with Down syndrome.

There is no doubt that Mary was a women of extraordinary talent, energy, compassion, and intellect. Without Mary, Normansfield and Earlswood could never have been the pioneering, progressive, internationally-renowned establishments they became, and hundreds of individuals with Down syndrome would have suffered for that. Perhaps we wouldn’t even be calling it Down syndrome. In my head at least, it is named after both halves of this Victorian power couple.