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There's a mountain of information online about what Downs Syndrome is and how it comes about, so I thought I'd cover the history and changes in society. This is an chapter from the book "This Way Up" (which you can buy as an e-book by clicking here!).

“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” – Maria Robinson

Freddie had the good fortune to manage to be born in something of a golden age for people with Downs Syndrome.  Well golden age is probably a bit too optimistic as there are still barriers to break down, but compared to a generation ago things are infinitely better.  The outlook for people with Downs Syndrome has changed almost beyond recognition.  There are of course people with Downs Syndrome in their 40’s and older who have had wonderful and fulfilling lives, but not many for a very simple reason; most of them died. Downs Syndrome is associated with a raft of medical complications including heart defects, a higher incidence of infections, thyroid conditions, leukaemia and pneumonia.  Without modern medical treatment, many of these conditions proved to be fatal.   

It seems that people with Downs Syndrome have always existed; certainly, there’s no evidence that they suddenly popped into existence. However, it wasn’t until 1866 that the English doctor, John Langdon Down published a description of the condition which is recognised today and subsequently took his name. It took until 1959 for it to occur to Professor Jérome Lejeune that it might be interesting to use recently discovered techniques for counting chromosomes to check the number of chromosomes his Downs Syndrome patients had. He subsequently proved that Downs Syndrome is a chromosomal irregularity and with an extra chromosome on pair 21. 

John Langdon Down referred to the children with Downs Syndrome as Mongoloid because he thought their characteristic upward slanting eyes were similar to the eyes the people native to Mongolia. During the last century, the term was increasingly seen as offensive and was generally dropped from use by the early 1970’s. This was around the time that opportunities for people with Downs Syndrome started to be transformed by three factors; medical advances, education and the acceptance of inclusion in society. By the 1970’s, inspired by the success of civil rights movements for racial and gender equality, people with disabilities became very active in fighting for legal rights. Pressure groups had a significant effect on Government policy and from 1970 a number of new Acts were passed to increase the entitlement of people with disabilities to be included in society.

Advances in medicine have had a profound effect and the subsequent rise in life expectancy is striking.  In the 1950s a baby born with Downs Syndrome was considered lucky to live into their teens and had a life expectancy of 12 to 15 years. In the 1960s it was only 18 years.  The figure rose sharply in the 1980s as techniques to repair heart defects common in people with Downs Syndrome were perfected and increasingly performed. Nearly 50% of people with Downs Syndrome have a heart condition and many would die, or be severely disabled if the condition wasn’t treated. In the 1950s many of the conditions simply couldn’t be treated.  The repairs required open heart surgery and techniques which have only been practiced in recent years.  Sadly people with Downs Syndrome have also faced prejudice and discrimination and have been denied life saving treatment on account of their disabilities.  It would be good to be able to report that this is in the distant past, but a survey by the Downs Syndrome Association in 1998 uncovered a shocking level of ignorance and prejudice amongst health professionals. Today life expectancy is 50 to 60 years on average and most studies conclude that they don’t really know what will limit the life expectancy of those born today who survive infancy and receive appropriate medical care.

This was all powerfully brought home to me one day in a shopping centre when Freddie was a baby.  I was having lunch in a huge Mall restaurant area, absentmindedly shovelling food from a jar into Freddie, who was sitting in a high chair grinning at all the passers by. As I was feeding him, I started to get the uncanny sense that we were being stared at.  At that stage I was still quite sensitive to Freddie’s appearance and felt very uncomfortable when I thought people were staring.  I looked at all the people sitting around trying to work out who it was that was disrupting our lunch.  An elderly lady caught my eye, smiled and came over. “Oh, I hope you don’t mind me looking” she said looking at Freddie, “but I used to have one of those”.  I didn’t know what to say – Freddie? “one of those?” but something in the way she was looking at him stopped me launching into a lecture about correct terminology. “Mine was called Katy” she said wistfully.

She paused for a short time and held Freddie’s hand while he looked at her solemnly. “I think it’s so wonderful that you can take him out, I could never take Katy out” and she started to tell me Katy’s story.

The lady was at least 70 so Katy had probably been born in the 1950s and was her first child. No one told her that she was a Mongol (her words) at first, and when they did, it was when they came to take her away to send her to an institution.  She’d refused to let her go and her family had been horrified.  She and her husband brought her home and everyone told them they were making a huge mistake. She had a friend who had a baby at the same time, but the friend would never let the children play together because she was frightened that her daughter might catch “it”. She couldn’t go to any coffee mornings or toddler groups for the same reason. When she took Katy out for a walk in a pram she would cover her up. Katy never went to school. She stayed at home all day, every day until she was 12; when she died.  “You are so lucky; I’m so pleased to have met you. Thank you” she said smiling, picking up her bags and walking off out of our lives.  My coffee went cold and I never finished the sandwich.

Having a longer life expectancy was great on the one hand, but could have been more of a burden than a blessing without two further upheavals.  One was the move to include people with disabilities in society and the other was education.

If I had left hospital with Freddie in 1968, the year I was born, I would have left holding a piece of paper officially deeming him “uneducable”. Even my spell checker doesn’t recognise it as a real word, but that’s how it would have been written on the form. From that point on he would have had no right to an education and it would have pretty much been left entirely to us as a family to do what we could for him. He almost certainly wouldn’t have gone to a mainstream school and probably would not have had any education at all. There would have been two options; to send him to an institution, or stay trapped together at home with no escape and no help.  It seems almost unbelievable that it wasn’t until the 1971 Education Act that it was decided that no one was “uneducable” and children with Downs Syndrome started to be entitled to any education at all. At that time people with learning difficulties were categorised as “educationally subnormal – medium” or “educationally subnormal – severe” and sent off to an appropriate special school. In 1981 parents were for the first time given the opportunity to send their child to a local mainstream school, but it was unusual, there was little specialist teaching and schools were given little help.

Astonishingly, it wasn’t until 1995, shortly before Freddie was born, that the Disability Discrimination Act entitled children with Downs Syndrome to attend their local mainstream school and not until 2001 that the Special Educational Needs and Disability Act put in place a framework that would actually give the system a chance of working.

That's a lot of change in a very short time.

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