They're Not All Like Her You Know...

They’re Not All Like Her You Know…

No-one has ever once said to me that not all 12 year olds are like our eldest daughter.

She’s an ace at discus, makes a mean batch of shortbread, is a loyal and generous friend and is confident enough to deliver a speech to a room of student nurses.

Our eldest speaks to student learning disability nurses at Positive Choices 2015

She’s exceptional and unique in ways that make us brim with pride as most parents do  about their offspring. Other kids her age might have dropped through our schooling system, be struggling with addictions or exhibiting anti-social behaviour, others are victims of abuse or neglect, but no-one ever feels the need to tell me that ‘they’re not all like her’.

Individual differences

Now, our 12 year old has a younger sister. She has her own strengths that we are proud to celebrate. She’s hilariously funny with a dry wit that can dissolve a room into giggles in seconds. She can mimic and mime in a way that garners your full attention. She’s sensitive, a sort of litmus paper of others’ feelings and can break up a tense situation like the most celebrated of comedians.

Comedy timing is everything

She also has an extra chromosome. 

And for some reason this leads people to say, “Ah, but they’re not all like her you know.” They say it a lot. 

Doctors have said it. Teaching staff have said it. Friends have said it.

I wonder what is in their heads when this slides from their mouths. ‘They’ does not refer to all 9 year olds of course, but to kids with Down’s syndrome. 

‘They’, a sub set, a type that is expected to be a certain way, more alike each other than the rest of ‘us’ or even their own families. ‘They’ refers to a stereotype that our daughter has just challenged in the mind of the speaker by being herself. Something within has stirred, a deep fear has arisen, an uncomfortable ignorance of ‘them’.

And the ‘Ah, but…’, the lead-in that says that as many of the conventional milestones that our daughter is meeting in this world in which we are all expected to conform to standardised targets, there are those who share her condition that are not.

And the ‘Ah but…’ means that although our daughter is living her life to the full, the speaker thinks that perhaps others with more complex needs would not. Somewhere in their mind is a judgment about which lives are worth living. And which are not.

Last week the College of Obstetricians argued a case for offering screening for Down’s syndrome to all women with a costly new non-invasive prenatal test, or nipt.

The reasoning was not that all women should be given the best possible sets of information to make decisions that are right for them and their families, or even to make preparations for their baby’s arrival. The argument was that this blood test cost should be weighed against the financial cost of support throughout the life of a person with Down’s syndrome. It was being sold as a cost cutting exercise.

So now we come down to the crux of the matter. Maybe some people need more support than we do, perhaps with different ways of communicating from our own, of behaving. And suddenly then we have made a decision that their lives are not worth living, that they suffer, that they would be better off not here.

Undoubtedly there are parents of children with Down’s syndrome who struggle through a maze of battles for support. Who are at the end of their tether with worry, who cannot cope.

Yet when over 97% of siblings report being proud of a brother or sister with Down’s, 99% of adults with Down’s class themselves as content with their lives and 79% of parents report a more positive outlook on life since parenting a child with Down’s (Skotko 2011), we should perhaps focus on quality education and support networks for these families, rather than buying into the misapprehension that the world is a better place without the unique wonder of anyone with Down’s syndrome in it.

New Documentary

This is a subject that is due to be explored in a documentary fronted by actor and writer Sally Phillips this week. She looks at the ethical issues around the way antenatal screening is delivered, the language we use to describe disability and ponders the kind of world we all want to live in, and what we would stand to lose in A World Without Down’s?

And even before people have watched it, I can hear the ‘Ah, but they’re not all like her son…’ echoing around. Of course they aren't.

A World Without Down's?

Which brings me to Uncle Martin

This gentleman, now in his 50s, has greatly changed the outlook and life of his nephew, a dear friend of mine.

Born in the 60s, life was very different for those with a disability and most of Martin’s education came from his parents at home. They in turn would have received little outside help or guidance.

My friend told me that Uncle Martin does not boast any traditional qualifications, has never had a paid job or lived independently. He’s never featured in a documentary, book or advertising campaign. Uncle Martin has led a very different life to the one our daughter is leading.

Uncle Martin shows us the important things in life

But as a young child my friend was not aware of labels and can’t even remember when he realised that Uncle Martin indeed had Down’s syndrome, simply seeing a man who he enjoyed watching hours of The Dukes of Hazzard and Knight Rider with. They got the same enjoyment from these programmes and delighted in playing games together.

Many years later, following the death of his parents with whom he had always lived, a very special residential home was found for Uncle Martin. He flourished in the family-run, warm community. He has his own room and takes great pride in participating in community events when the home opens its doors to sell fruit and vegetables grown in their ever-expanding kitchen garden.

When my friend visits, now with his own family, he finds a man whose sight may be weakening, and whose legs give him discomfort, but who still has the most positive outlook on life.

It is now his young son who is learning much from Uncle Martin. He cannot imagine never having this important man in his life and knows not to judge others’ differences or abilities against his own.

Uncle Martin has been happy and included by all around him. He has taught them the values of gentleness and understanding. He is clearly loved, cherished and in no small way has broken down barriers in his own right.

Future Generation

Children and young people growing up with Down’s syndrome today undoubtedly have many more opportunities and no-one can say what Uncle Martin’s life might have been like with better healthcare and early educational intervention. In many ways it doesn’t matter.

They’ll always be others who are not like Uncle Martin or our daughter or anyone else with an extra chromosome. There’ll be those with more health issues, more challenging behavioural problems, more complex needs. There’ll be those with no healthcare issues at all, fluent speech and a string of GCSEs.

One thing we can be sure about is that we are all unique. 

Collaboration

A World Without Down’s? gives a balanced view of attitudes towards the condition as Sally shares her story. It calls for us to all to take a step back and see the unique qualities of each and every human being and, more importantly, it draws the medical and the social together. It does not dictate. There are no bad guys. It does not seek to remove choice, in fact the opposite is true.

My hope is that it will serve as a springboard to further collaboration, education, understanding and the support that we all need at different times in our lives. Already links have been forged between medical teams and the Down's syndrome community as a result and I am proud to have been asked to work with Oxford University obstetrics students as an Expert by Experience. The ripples are already being felt. 

What this programme and this discussion has cleared in my head though, is that perhaps when society seeks to remove what it sees as unproductive members of its group, it will lose precisely the element that can make it stronger.

One thing we can be sure about is that none of us are the same, and therein lies our collective strength. If you take away the one part that you think is superfluous to requirements, you may soon find that the whole is weaker.