Thoughts on Down’s Syndrome

downsyndromeTEXT1 down-syndrome

I spent nearly 20 years as a carer in the UK working with various client groups and for some of that time it was with people with Learning Disabilities such as Down’s syndrome. Richard Dawkins was foolish enough to make the pronouncement below on Twitter this morning about what to do if your baby has Down’s, and has been well and truly rebuked for it. I have included his thoughtful apology as well. The Al Jazeera article I have linked to at the bottom gives more of the actual exchange as he tries to refine the position in response to the outcry but essentially his position was and still is that he would – ‘Abort it and try again’.

When I started care work in the late 70’s the largest group of those who needed care and  were classified as ‘people with Learning Disabilities’ had Down’s. There is a belief that those with Down’s are always happy and to some extent this is due to the facial deformation that is part of the condition,  but it is true that in general they have a far sunnier disposition than most who need help with their day to day lives. As a group they were certainly some of the most rewarding and life affirming of all the people I worked with.

For their families though it was often a different story. To my mind no one has really addressed the issue of what happens to those with Down’s as they become adults and then age and how challenging it can be to care for someone for 30, 40. 50 even 60 plus years.

Up till the 1970’s a Down’s child was always either dealt with by the family or locked in a large institution. Things had come a long way from the days when a child with Down’s was killed at birth or  left out to die, but the number of children with Down’s who survived had always been reasonably small – the condition has many other serious health impact such as heart problems and Epilepsy which until the 20th century we didn’t have the medical technology to cope with.

By the late sixties and early 70’s it became clear that chiefly because medicine was now helping to prolong their lives, we had a large number of ageing people with Down’s syndrome living with increasingly frail and elderly parents. When that situation eventually broke down there were few alternatives and people with Down’s would end up in mental hospitals or worse. As a society we started to look for ways to deal with this in both the UK and the US.

At first the response was to look towards larger institutions but it was fairly quickly realised that ‘people with Learning Disabilities’ in general didn’t fair particularly well in a large impersonal living situation. There were a number of experiments in trying to set up smaller and more local facilties and by the Early/Mid 80’s things in the UK  had moved towards the small group home. Then the political wind changed and suddenly most publicly provided care was suddenly far too expensive.

Care in the community was the vogue and large hospitals were closed and much of care was privatised. To the private sector running small homes really doesn’t work financially – losing 25% of your income when someone dies or moves on is a dire situation whereas if its only one of a 100 residents the impact is nothing like as disastrous, so care for people in this category in the UK at least is usually either non existent or grudgingly provided by the Local Authority. Fostering is so specialised for this group as to be very rare.

For most ‘people with Learning Disabilities’ this means their lives are going to be very similar to what they would have been in the 1940’s and 50’s – they will live with their parents until either they or their parents die – there may be some help in the form of a visiting ‘support worker’ and there may be a day placement/ work environment that they can attend as they became adults. When the parents die there will be an attempt to keep the person living in their own home with increased support workers, but if that fails there are few palatable alternatives. In the US and to some extent the UK if you are rich enough you may be able to pay for suitable care of reasonable quality but because of the long timescales involved you have to be very well off if it is to last the rest of the persons life.

I was often asked the same question as Dawkin’s was when I was carer and I found myself conflicted in very much the same way he was. I have personal experience as to quite how charming and interesting many people with Down’s are and how interacting with them can be a fulfilling, genuinely life affirming thing. But as a parent bringing someone into the world with those needs is a decision that has to be taken seriously. You will be making a commitment to care for them for most of the rest of your life – unless the political wind changes again – and when you can no longer do so the options may not be all that you would wish them to be.

Lord Rix – known to most as plain Brian Rix the actor famous for appearing in Farces on the West End Stage – has been a campaigner on these issues for many years. I met both him and his eldest daughter Shelley who had Down’s, back in the early 80’s when he was very active in MENCAP – the charity for people with Learning Disabilities. He is now 90 and he and his wife cared for Shelley (who died in 2005) for over 60 years. He has also campaigned tirelessly for improvements in the lives of people with Learning Disabilities. If you ask him how hard it was I’m know he would have many stories to tell. If you ask him was it worth it I’m his response would undoubtedly be yes! The tough question would be if he had the choice back then what would he have done. I pretty sure it would at least make him pause and think.

Since the introduction of reliable tests to show Down’s early in pregnancy about 92% of pregnancies in Europe with a diagnosis of Down’s syndrome are terminated. In the United States, termination rates are around 67%, but this varies significantly.

Publication2

resize

 

Al Jazeera Article

Wiki

Lord Rix Article

Richard Dawkins gets it all wrong, yet again – Imagine a world in which Richard Dawkins responds sensitively on a complicated topic. We’ll wait …

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s