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  • Writer's picturecaitlyncallery9

Caring for Ben.

In “The Earl Pretender,” Robert Carrow discovers he is not the oldest son and heir of an earl, as he has always believed. He has an older brother, Ben, who disappeared shortly after birth. On learning of Ben's existence, Robert sets out to find his brother and bring him home.

Ben has developmental disabilities which impact not only his life, but the lives of all who care for him. In fact, he was born with what we now call Down’s Syndrome, though it wasn't called by that name then – Dr Down, who gave the syndrome his name, was not even born until 1828, ten years after the story is set!

Today, being born with Down’s Syndrome is not the impediment it would have been 200 years ago. With advancements in medical care, education and social care, together with a sea change in public attitudes, people with Down’s Syndrome often can, and do, achieve as much as anybody else. The syndrome is not the barrier it once was to career choice, educational opportunities, or anything else. People with Down’s are no longer written off, segregated or stigmatised, as they once were.

They can also expect to live a normal lifespan, whereas in the year 1900, the average life expectancy for someone with the syndrome was just nine years. In Regency times, it would have been even lower.

In The Earl Pretender, Ben is a physically healthy thirty year old man, but he has had the advantage of a loving foster family who have seen to his needs, put him first, and treated him with respect and dignity. Jane, who has grown up believing him to be her brother, has a low tolerance for anything she sees as disrespect for him, a protectiveness she displays within minutes of meeting Robert.

Jane's family is able to care for Ben at home because they have the wherewithal to do so. They are from the gentry, and their income, while not vast, is sufficient that they are able to devote time and attention to him. That option would not have been available to someone of a lower economic class. People in low income families would have had to work long hours for very little pay, and they would have lived hand-to-mouth existences. Everyone, from the youngest child to the most ancient of grandparents, would have had to make a contribution, and somebody who could not do this would have placed an intolerable burden on the entire family.

For people with disabilities who came from this level of society, no matter how much their family loved them, there would have been little choice but to be taken from their homes and put into asylums, (such as the Nottingham asylum, pictured here) where they were often treated with horrendous cruelty and insensitivity. Once inside the asylum, they would probably not have lived long, and their existence would have been miserable, to say the least.

It must have been heart breaking for families to make decisions to give their loved ones into the care of those who ran the asylums. Even today, when we have excellent care and residential homes with dedicated staff, it is not easy to do. My son has Prader Willi Syndrome which, like Down’s Syndrome, is usually caused by a chromosomal anomaly. When the time came that he was ready to move from the family home to full time care, it was difficult. Even knowing it was the best thing for him, it was, by a large margin, the hardest decision of my life. It almost broke me. To have been forced to make that decision without the safeguards and guarantees of today's world is unimaginable.

Ben is blessed, in that he has Jane and Robert, who are able, and prepared, to fight to protect him. Sadly, many others were not so lucky.

The Earl Pretender is published by The Wild Rose Press. Released on 19th June, it is available for pre-order here.

You can find more information on Down's Syndrome from the Down's Syndrome Association.

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