Minette Marrin’s column last Sunday was entitled “Parents of a Down’s child
must make painful choices”. I am the mother of a child with DiGeorge
syndrome, the most common genetic anomaly after Down’s.
Incensed, I remarked on her article in the blog I write for parents of
children with special needs (times-online.typepad.com/india_knight).
Within 24 hours it had received dozens of impassioned comments from other
parents, who were outraged at being told that the world would be a better
place if their children had ended up in a hospital incinerator.
Marrin said that if a woman found that her foetus had Down’s syndrome, she
should abort. She should do this because a) having a child with a disability
is demanding and expensive; b) “a damaged baby is a damaged family, even
now”; c) “in a hyper-sexualised culture that worships bodily perfection,
beauty and sexual success, adult life is also bound to be painful for people
with Down’s”; and d) what happens when the parents die and the child with
Down’s becomes a burden on the state or on its siblings?
This last point is the most vilely insidious because it suggests that aborting
a child with Down’s is a social duty. This is the purest form of eugenics:
it is Nazi doctrine.
Marrin is right on point a): having a child with disabilities is both
demanding and expensive. I find all my children demanding and expensive, but
I know what she means. I am middle class and can afford help; I am
articulate enough to obtain further help from outside agencies.
Many parents of special-needs children aren’t and can’t: they are entirely
reliant on state help and on negotiating the astonishing bureaucracy that it
involves. Given that they are often depressed, frightened and misinformed,
at least initially, you have a demoralising scenario. Nevertheless, I now
know an awful lot of parents of children with special needs far severer than
Down’s, many of whom aren’t well off, and none has expressed regret at not
having aborted their child because looking after it is expensive and
time-consuming.
Still, let’s be generous: it is expensive and it is hard and your world-view
shifts and sometimes you cry. What Marrin seems unable to grasp is that
these things – time, stress, expense, anxiety, tears – are sacrifices that
parents are happy to make because they love their children. There is no
mention of love in the 1,050 words of her column, nor of hope or faith or
compassion or even kindness.
As for point b): imagine being the kind of person who looks at a newborn and
thinks “damaged”. Imagine seeing a family laughing in the park, one of whose
members is a child with Down’s, and thinking: “Damaged, every one of them.”
A reader of my blog wrote: “My ‘damaged baby’ trotted off to school this
morning with his ‘damaged sibling’, full of excitement because it’s his
birthday. Meanwhile, my ‘damaged husband’ is at work and our ‘damaged
family’ seems to be having, er, a rather nice day.”
Marrin wrote of a relative (she didn’t say who) who was disabled (she didn’t
say how) in her article, and referred elliptically to her own experience,
which was clearly unhappy. Move on, love. My dad didn’t get on with his
sister; it doesn’t mean that he went around advising people to abort girl
children.
The (rather telling) point c) – who would have sex with these people? – is
bizarre. Do we need to concern ourselves with the question of whether the
sexual needs of our unborn child are likely to be met in adulthood? Besides,
what are we to do with other sexual undesirables – should we cull the fat?
The ugly? What about the old, with their spindly bones, eating up National
Health Service resources and, if Alzheimer’s strikes, mentally retarded to
boot? They just sit, all doddery – not many takers on the rumpo front.
What’s the point of them?
I would never deny any woman the right to make an informed choice about her
pregnancy. I didn’t know about my daughter’s condition when I was pregnant;
it is possible that, had I known, I would have had an abortion. Fear,
prejudice and articles that reinforce both would have helped me along.
Needless to say, I’m glad I didn’t have a termination. But that’s not the
point.
Ending a pregnancy in which there is a genetic anomaly or other disability is
an option that all women should, and do, have – although Marrin was writing
specifically about Down’s (she forgot to make any mention of the medical
advances taking place every day, especially in cardiac surgery).
Abortion is a personal, subjective choice. I question the wisdom of a
columnist passing off her ugly, out-moded opinions as sound advice. Is she a
doctor as well as a council member of the Centre for Policy Studies? A
psychologist as well as a sometime member of the ethics committee of the
Royal College of Obstetricians & Gynaecologists? Or just someone who has
never carried, given birth to or parented a child with special needs? The
father of a teenage boy with Down’s told me last week that he fears Marrin’s
view is one that may be shared by the majority of people: “Sitting on the
Tube, it’s probably what people think about my son.” He is wrong, I think,
unless his carriage is stuffed with OAPs.
Marrin’s postbag was as full of people agreeing with her as not – “Well done
Minette,” wrote one. “I am a retired teacher with over 40 years’ experience
teaching children and adults with multiple handicaps including Down’s
syndrome . . . [You] said what needed saying” – but the experience of many
of her correspondents was decades old, which is to say, redolent of a
culture in which “mongoloids” were invisible and disability was synonymous
with shame.
That world has gone, and with it the ugliness Marrin gave vent to last week.
My experience, and that of my correspondents, is real. We know that life can
be tough but that people are fundamentally good and compassionate. Seemingly
rough bigger boys show my little daughter extraordinary care and kindness at
school. My giant teenage sons’ giant teenage friends, in between gigs and
girls and parties, sit down to play with her for a moment or stroke her hair
as they galumph past.
Modern medicine works miracles. It is 2008. Nobody is embarrassed. Children
with Down’s don’t get sent to “homes” any more. Their siblings are happy to
stand up and be counted. Most urban children know at least one child with a
disability. Kids with cerebral palsy get asked to play at friends’ houses.
Yes, their parents need more help and more support, to say nothing of more (or
even some) respite care. Many need help negotiating those mountains of
paperwork. But they are there and they are proud and they love their
children to pieces. And that is human and tender and complicated and
beautiful. Olga Bull, 37, pictured, is the mother of Josh, 3, who has
Down’s, and of Noah, 1, who does not. Mrs Bull’s sister also has Down’s
syndrome.
“My sister is 27, and for her to read Marrin’s insane comments was just . . .
unbelievable,” she said last week. “There’s been such a huge change in
society and services since we grew up. You have early intervention, and Josh
will be educated in a mainstream school, unlike my sister. I hardly ever see
the look we used to get when my sister was a child – only occasionally from
old ladies, who look at Josh and say how sorry they are. It’s just
ignorance. I run a Down’s group in Greenwich, and one of our young men is
representing the UK at the next Special Olympics. He’s a skier – he’s been
skiing since he was five. That’s the world we live in now, the world Josh
will live in: it’s the reality.”
