As many of you know I was asked to give evidence in a Parliamentary Inquiry into the current Disability Abortion Law in this country.
With exactly a week’s notice I was given
the important honour of being asked to speak in a multi party Parliamentary
Inquirty into Abortion on the Grounds of Disability that would try to:
- Establish and assess the
intention behind the law governing abortion on the grounds of disability.
- Establish how the law works in
practice and is interpreted by medical practitioners.
- Determine the impact of the
current law on disabled people and assess the groups representing their
interests.
- Assess the effectiveness of the
information and guidance provided to families following the diagnosis of a
disability and the impact that has on outcomes.
- Examine how the law, guidance
and support for practitioners and families can be developed going forward.
Very well aware that this is a highly
emotive subject, I accepted and began my research. I didn’t sleep before about
3 am on several consecutive nights, reading around the law, which limits
abortions to 24 weeks except in the case of Ground E abortions for babies ‘at
high risk’ of ‘severe handicap’ (not defined), for whom a termination is
possible ‘up to and including during birth’, and believe me, you do not want to
know details of what that entails.
I found and absorbed, tried to understand
and respect if possible, every conceiveable opinion from considering
contraception as murder to believing in a woman’s right to choose to terminate
at any stage of pregnancy and for any reason, including the baby’s sex.
I found many important ethical questions
raised, such as how this difference in law constitutes disability inequality, how
it must make people with disabilities feel about how they are valued in society,
or how pregnant women of babies with disabilities are being singled out for a
much less supportive service than those carrying a healthy baby. Even how the
notion of ‘choice’ that is often used with the decision to terminate is often
not so much a choice, because that is being offered as the only option and
therefore parents are often not ‘choosing’, but being coerced, persuaded to go
down that route which they see as the only one available.
Those whose opinions sit at either end of
the scale seem to be the ones who shout the loudest and get the most media
attention. This cemented my resolve to voice the experiences and thoughts of
the quieter many who sit somewhere in between. My nerves grew more and more
frazzled. I live in the quiet of the countryside, London is a 5 hour journey
away, I’ve never even visited the Houses of Parliament as a tourist, let alone spoke
on such a hot topic there.
I found out that I would have about 5
minutes to speak, that’s not a lot of time at all. So, I set about writing a
piece that could contain as many real anecdotes from other families’ experiences of
testing, diagnosis and support as possible, that would shout about how
gloriously wonderful our children are, that would express our concerns that our
children are being misunderstood and feared.
I set out on Monday morning, my speech in
triplicate in different areas of my luggage in case I lost one. I printed a
collage of photos of Natalia enjoying everyday activities, to hand out to the
14 MPs who might be present. After all, a picture speaks a thousand words.
 |
| The photo I handed out to the MPs, showing Natty from birth, through heart surgery and enjoying a full life. |
I arrived monstrously early to clear
security at Westminster, and sat down for an informative chat in the coffee
shop with Sue Buckley, Head Scientist at Downs Ed.
Sadly Dr Liz Elliot was taken ill and
couldn’t attend. I was yet to meet Lucy McLynn, Mum of Daniel who is Natty’s
age, and an equality lawyer who would also be giving evidence, along with
representatives from the Cleft Lip and Palate support group (CLAPA), Beezy
Marsh, a freelance journalist with a history of research into abortion
statistics and DR Kevin Fitzpatrick OBE who was to turn out to be one of the
most inspirational speakers I have heard in a long time.
London was freezing, snow was in the air,
the Houses of Parliament are very old and not very well heated. I had swapped
my country wellies and fleeces for a serious dress and heels. That and my
nerves conspired to make me shake, well, not nerves exactly, but my extreme
keeness to get my point across in the little time I had.
My time came. This is approximately what I
said to Fiona Bruce MP, Virendra Sharma MP, Baroness Hollins of Wimbledon,
Baroness Benjamin of Buckingham, Rob Flello MP and their team, including
members of the public who were present. The stenographer wrote down the exact
words and the transcript will be online at www.abortionanddisability.org
in just over a week. Last week’s evidence will be online in a few days. Two
more sessions will follow next month including evidence from a woman with Down's Syndrome.
I
believe that I typified the completely ‘average’ prospective parent before
Natalia was born. My opinions on
abortion were not extreme, one way or another. I understand the need for women
to have a choice, but I also have a strong sense of humanity.
I know
that I speak with honesty for masses of families with loved ones with DS now. I
have woven their shared stories into what follows.
When
pregnant, I bandied about the universally used soundbite we all say without
thinking;
"I don’t
mind what the sex is, just as long as it’s healthy…"
(and what if it wasn’t? What is the
dangerous unspoken subtext there?)
I
have always been respectful of those with disabilities, but did not think it
would ever affect our lives personally. Nobody does.
I call this the
blissfully ignorant, arrogantly complacent time of our lives. The time
before we broke through the glass ceiling, and understood what life was really
all about. The time we protected ourselves with a naiive sense of
security that a healthy, clean living, woman like me would, of course, be expecting
another healthy baby and that that was all that mattered. That is was the only
goal in life. I think differently now of course.
I
hate to think what might have happened had we known Natalia had Downs Syndrome,
had we not feared the risk of the invasive tests after several miscarriages,
had our midwife not wisely said it wasn’t important to know.
What
if we had opted for the new early blood test, you know, "or peace of mind"? (Screens only give you peace of mind if you
hear what you want to hear don’t they.)
I
might have panicked, swept away on the tragic language of doctors;
the "risk of our baby having DS", their "concerns".
Being
told that she had "tested positive",
the ways in which she would "suffer
from" the Syndrome.
I
might have wanted that "afflicted" baby
out of me as soon as possible, worried about the life she would struggle
through, the pain she would feel, fuelled by my own fear and ignorance.
If
the medical professionals we trusted implicitly simply gave us two leaflets at
point of diagnosis, one on CVS, the other Termination, and warned us gently and
sympathetically not to approach any Downs Syndrome support groups because they
are ‘pro life and would try to change our minds with emotional blackmail’ would
we have followed their lead?
If
our community midwife had rung us at home on Friday evening with the "bad news" of a "chromosomal abnormality" (or worse still popped a
scribbled note, not in an envelope, through the front door for extended family
to find) and straight away said there was a slot for a termination on Monday
morning, would we have assumed that was our only viable option?
The
answer is I don’t know what we would have done.
Perhaps
I would have wanted to keep the little life that was moving inside me, and
my husband not...what then? Perhaps we would both have rallied and
strengthened ourselves in time. Perhaps we would have had a balanced and
unbiased consultant who gave us all the options, they must exist. Who knows.
But approximately 92% do feel there is no other way out in a society that still stigmatises
disability and with support networks ever decreasing.
I do
know parents aren’t being given balanced information in order to make informed
choices and are left with little or no support or couselling during or after testing,
diagnosis or termination.
A
woman I met recently was sympathetically told ‘this must have been a very
difficult decision for you to make’ by a midwife as she birthed a baby she was
sadly miscarrying naturally. Such is the assumption that parents will terminate.
Other
couples, having made the decision to continue with a pregnancy are being asked
if they are “sure” at each scan and
medical appointment, and reminded that a late termination can be “arranged”.
I like
to hope the reasons for this are the doctor’s own ignorances, an out of date
view of disability, a residue from the days of institutions.
I
fear it is more a question of cost.
Natty
is 6, an ambassador, a teacher and melts hearts wherever she goes. She puts
back far more into society than she takes from it, as she entertains, laughs,
sings, dances, jokes, brings people together, even models professionally,
bringing inclusion into advertising and widening our narrow concepts of beauty. She
has taught many acceptance, understanding and patience, for inclusion is a 2
way street that I sadly missed out on growing up in the 70s.
She
has made me a better person.
She
intuitively watches out for the emotional needs of her friends and classmates,
always there for the needy, the upset, the ones with the bumped knees, anyone
who needs a quick rendition of a Mary Poppins tune to rouse them.
You
see, a person's worth can never be measured in pounds coins.
Having
a disability does not make you sub-human and we should therefore all be
protected by the same laws. There will always be extreme exceptions needed to
protect the most vulnerable women in society, but the abilities of the foetus
should not be a factor.
Do I think DS a serious handicap? No.
Do I think it’s a reason to terminate on it’s own? No, although I would never judge anyone's decision. It is not an easy road.
Do I think terminations up to and including during birth
should take place? No. When
I told those in our community about this Inquiry, all were universally shocked
that this is legal in our society.
“Barbaric”
“Archaic”
“Appalling”
“I’m
stunned”
“My
little one was only X weeks when she was born.”
“DS,
Cleft lip, club feet? Whatever next, ginger hair?
I
leave you with the words of Natty’s big sister Mia, 8. The sibling I worried
would be affected negatively by her disability in the early days:
To
Natty
I love you so much
and
you are the best sister
in
the world and so preshus to me.
You
are so important to me
and
if you weren't in this world
my
life woudn't be the same
and
that would be terrible.
So, I love you very much and you mean evrything to me
Lots
and lots of love from Mia xxx
That, in a nutshell was
that. Others spoke factually and brought figures and legal points to the table.
We were all a different shade of the same painting. Every one equally important
part of the bigger picture being created.
There followed questions
on whether we thought eugenics was at work. We all had to agree it very much
looked that way.
What did we feel should
be done to support families. Be given balanced info of all available options,
offer prospective parents a chance to meet existing families, change doctors’
loaded language to more neutral and person-centred lay terms. I am still
reeling from the Mum of a little one with a cleft lip who was told during a
scan that her baby had ‘a facial deformity’.
There are many incredible
medical angels out there. Thank you to them. Let’s create a few more, uncover the hidden statistics and get some proper balanced support for parents, whatever their decision is at the end of the day.
Before Natalia was born, I unquestioningly believed, as do most prospective parents, that the recommended antenatal tests were for our peace of mind. I naively spouted that we didn’t mind what the sex of the baby was, 'as long as it was healthy'. I refused amniocentesis after an inconclusive nuchal fold scan, because of the 'risk of miscarriage to a healthy baby'.
