Evidence in Parliamentary Disability Abortion Law Inquiry

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.

Reading and Writing Tips for Children with Down Syndrome

Natty writes her name independently

Yesterday I found a scrap of paper on which Natty had written her name, independently, without a model, and without anyone even watching. 

This was a momentous occasion for all of us, something we have been working towards for years if the truth be known.

I don't have all the answers, or all the ideas that will work for your child, all children develop at their own pace and enjoy different activities. Natty just happens to like writing and here are a few of the things that worked for her as she begins to write. 

We didn't do these activities exhaustively, but at Natty's pace and when she felt like it. Doing activities in a fun way in short bursts is much better than forcing your child to sit and endure a task for a long time. Other activities for speech and physio took over at different times as did hospital stays and so on. This is just a guide.

When Natty was around 2 years old, a speech therapist from charity Symbol UK visited our local area and told us she was ready for sound work. We were using Makaton and Natty was making some lovely sounds and simple words at that point (It's hard to remember, but I think 'Daddy' and 'cake' and 'star' and 'biscuit' were among her first essential utterances.) We were also using the See and Learn materials from DownsEd which involved matching pictures in the early stages.

She put 2 cards in front of Natty, one with an 'a' and one with a 'n'. She then held up an 'a' card and using Makaton she asked her to find the 'same'. Natty did this with her eyes. I remember watching her closely and seeing her look at the other 'a'. She had done it!

This was a very emotional moment for us all and there a few tears. Why? Because we could have been doing this sooner, but had lacked the guidance. Because we were relieved to see the way forward. Because we wanted everyone to know what was possible for children with DS. Because we knew a lot of hard work was going to be involved from now on...

Jolly Phonics and Ruth Miskin cards

We rushed out to buy various sets of flashcards with the letters written clearly on them. A set sat in the bathroom at home and pre-school (potty time seemed to work well for us as a time to work with sounds). Most usefully we bought 2 Jolly Phonics friezes, from Amazon, showing all the sounds and an accompanying action. For example 'a' is a tapping motion going up the arm, signifying 'ants crawling up the arm'. 

We played the CD with catchy rhymes in the car. (Available from ELC).

Children with DS are visual learners, so seeing a picture as well as doing/watching an action helps cement the sound they are hearing/producing (in the way that Makaton works wonders for language development).

Daddy Downs Side Up and I spent a week of evenings cutting them to size, laminating them and rounding the corners for safety. Time and money well spent, as we still use them. If you can beg, borrow or buy a laminator you will use it constantly.

• Focus on one sound/action at a time.
• Choose sounds your child can already make at first.
• Then show 2 different cards and ask them which one is 'a' for example. Looking at the right card counts as a correct answer, so little one doesn't have to be able to point.
• Children who are able to walk love finding the letter sounds hidden around the house, or jumping onto the correct sound on the floor.
• With 2 set you can play snap and other matching games.

When Natty began school at 4, she knew most of her phonic sounds by sight. However, she began reading, using a whole word approach. There is evidence that children with DS are very able at this, recognising whole words by shape alone. It's very useful for high frequency words that follow no logical sound pattern as well. So we: 

• Made flashcards with words on and stuck them around the house/ on the fridge 
• Matched the mini flashcards to words that were the same within texts. 
• Made simple games of snap/bingo with the words

She then began reading simple texts using these words (Oxford Reading Tree), but we kept up the individual phonics work with a view to her learning to blend and write. After all, we all read using a combination of whole word recognition, blending and prediction based on understanding of what will come next.

Natty traced her name onto her
Pre-School graduation mortar board

Next came learning to write these sounds that she could by now read. 

The correct writing position is vital, so that your child has core stability, giving the strength to write.

We purchased a variety of pencil grips and played around til we found one that suited her fingers. We then found triangular pencils with grooves cut in them and we moved to those.

We began by using dots for Natty to trace over (you can find fonts that do this on your pc or you can create the dots freehand), letter shapes to colour in (free downloads are widely available online) and guided Natty's arm from the elbow to make the shapes to encourage errorless learning. There are also letter tracing Apps for iPhones and iPads.

Natty the Kumon tracing books (available from Amazon) as they provide simple steps to writing in a fun, bright and interesting way.

Natty's TA made sure that she was sitting in a stable position at her desk. In order to have core stability and pencil control your feet must be grounded. At school Natty has a foot wedge, a textured cushion which stops her fidgeting and a writing slope. At home we used either a small chair and table, or later on a Tripp Trapp chair which has a built in foot ledge. You could use cushions, books or a toilet step for your child's feet. We found a writing slope in IKEA for around £2.

Seating position is crucial

A writing slope makes life easier

To stop paper and slopes sliding around cut a length of non slip material (available from kitchen shops) to put underneath.

When Natty was showing signs of being ready to write independently, we introduced the Ruth Miskin flashcards (part of the Read Write Inc scheme), again a couple of pounds from Amazon. They show a picture within each letter and give you a catch phrase to remember how to write each one. (Shown above).

• 'round the apple and down the leaf' for 'a', shown above.
• 'down the tower and across the tower' for 't'.
• 'down the horn, up the horn and round the yak's face' for 'y'.
• For the capital N of her name we just shouted 'up down up STOP', which Natty adored.

Natty practised writing over countless different printed towers, apples and yaks, before we removed the pictures altogether and simply repeated the phrases as she wrote. We are just at the beginning of the writing journey, but here she is, writing her name without help and leaving it proudly for Mummy to find.

Here's a little video we made at home last year of Natty, in Reception class, learning her sounds and words and beginning to read. Mia was the camera woman by the way!