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.
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| 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.
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| 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.
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| 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.
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| 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.
