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.
“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:
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.
Reads really well. Good for you. Abortion is not legal here (Northern Ireland) and our consulatant told us that is why there is such a vibrant and thriving DS community here.ReplyDelete
That's why we love visiting Ireland. Natty is always so welcomed :) Thank you for your comment xDelete
Well done! You did it! What a huge accomplishment Hayley -you worded it beautifully, and lovely to add Mia's poem and the gorgeous photos will continue to speak volumes.ReplyDelete
Thank you, you are very kind. I fretted but wanted to get the human view across.Delete
An excellent, well balanced statement. I believe in a womans right to choose but was shocked to be asked repeatedly up to 27 weeks if I wanted a termination. This, even though my consultant had written on my notes at 18 weeks that I had chosen to proceed with the pregnancy and I should not be asked again. Or the look of shock from doctors when I said "but it's only down syndrome!". I shudder to think of the sheer joy we would have missed out on if we hadn't stood our ground and had the fabulous, unbiased support of our amazing obsteatrician. Having looked into the matter further it seems obvious to me that eugenics is definatly a very real factor that needs to be recognised and that more support needs to be given to people who find themselves in that situation. And thanks to your brave words perhaps that will be achieved! Thankyou and well done.ReplyDelete
Thank you so very much. I was trying to be the voice of the middle ground whilst pointing out what is unacceptable. xDelete
Wow! Amazing Hayley. Well done you! A beautifully written and well balanced pieceReplyDelete
Thank you. I am rather tired now though xDelete
You know I am alligned.ReplyDelete
It is a privalege to have you as a friend Hayley - you are a gifted spokesperson for people who are different. God does not make mistakes and Natty is one of the very special people who are chosen, each to be a "duine le Dia", a child of God who will never stray away from that path of goodness.Funny old world.....life is more challenging for the parents, sisters and brothers of a special person - and your lovely family illustrate both this and the joy you gain in return. You were never destined to be an apple pie baking housewife picking up spots of dust around the house.....dear HayleyDelete
This means such a lot coming from you Helen. Thank you.Delete
Thank you dear Mardra too x
As always, your words are true and honest and hard to deny. Thank you for your courage and willingness to stand up with "knocking knees." You are a hero. Even from over here. Give those sweet girls a kiss foe me. (Dying to update your cover photo!!) (Although it is one of my all time favorites).ReplyDelete
Thank you dear friend. You were part of the beginning of all of this and I thank you for that xDelete
Pitched at the perfect level. Clear, sensible, honest and it made my lip wobble a bit. xReplyDelete
I so meant to consult you Renata but the time flew and I got stuck in my research and late nights of writing it through my sleep. Every time my head hit the pillow in darkness another paragraph would come and I had to turn the lights on and write it down xDelete
Every so often I am shocked or amazed at people's stories and experiences like those above, and those from the group I go to. Just over two years ago my husband and I adopted our two children after finding out we couldn't have our own naturally, my daughter has DS and as challenging as it is at times I have never regretted our choice. I can't believe this law or the attitudes of health professionals who don't live with it day to day. All children are truly of worth and special children are just that SPECIAL and those lives they touch wouldn't change them for the world, they are gifts from God! I learn so much from my daughter each day and thank heaven I didn't pass up this opportunity to be her Mum. Thank you for being one of many who speak for these children and us as their parents!ReplyDelete
Thank you and to you too with what you have done. H xDelete
Well done Hayley, having watched your videos I can just picture how you delivered it too. You have done us all proud. Thank you so very much.ReplyDelete
Well, I am proud to say, yes, I did demand their attention ;)Delete
Well done Hayley, such passion and commitment. You are love. xxReplyDelete
You are very kind but for me it's personal. I have no choice but to change things :)Delete
fantastic! well done, policy making all too often gets bogged down with figures ,statistics & budgets! governments should always focus on people not policy! your speech so eloquently puts a person, a real live funny beautiful & charming little person at the heart of political debate and hopefully help to make leaders & decision makers aware how poor political decisions impact on so so many Bravo you!! im not religious in any way but this song sums up what im trying to say :-)ReplyDelete
"all gods creatures have a place in the choir, some sing low and some sing higher, some sing out loud on the telephone wire... and some just clap there hands or paws or anything theyve got now"
I love this song, so apt. Thank you xDelete
You have done immensely well with this Hayley. I know that it is hard to stand up and be heard in such a forum, and you have nailed it. Thank you for being such a strong and gracious voice for our children.ReplyDelete
I will making a submission to the inquiry as well. It really is a very important oppurtunity for positive improvement.
High praise from you Mike and I look forward to reading your submission.Delete
Brava! I told you you'd ace it! Very very proud of you.ReplyDelete
I took with me the courage and believe you all gave me. Thank you inspirational lady.Delete
Thanks so much for this. It was amazing to read.
Thank you for reading xDelete
Hayley I hadn't had the chance to read this blog post until now with all that is going on. Last night I wrote the afterward for Six Percent and this morning, awake again and working on the project, I felt drawn to read what you'd written. I'm sitting here 7.30am moved by what I've just read. A subject very much on my mind this morning crystallised by your wonderful writing. Its so important that you continue this dialogue as your views are so honest. What you say is emotional, as your an emotional person, but laced with real insight from your life experiences. In talking about how you felt, and by that I mean how you 'really' felt then you are able to come as close as possible to putting those who haven't shared your experiences right where you were. That gift of great communication coupled with your determination to allow others their views, where reasonable, makes for a powerful recipe for change. There is no doubt in my mind that you are driving changing views in taking this approach. Thank you for what you do Hayley. GReplyDelete
Hayley, from my daughter and I THANK YOU! like Lisa, I adopted my beautiful daughter who just so happens to have DS and have been blessed to have her since birth. I cannot imagine my life without her and she has made me a better person and fills everyday with love and laughter. Yes some days are more challenging than others due to health problems but we have a fab 'team Eva' filled with brilliant health professionals and Eva loves life. I have very sadly witnessed a consultant tell a mother that he could 'sort' her problem, after informing her that the amniocentesis results confirmed DS. I have never felt so sad and wished I could tell her that its not as scary as people imagine and her child was definitely not a 'problem'. I pray the law is changed and that families are given better information and counselling before having to make decisions. Thank you again, laura xReplyDelete
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My daughter has Down's Syndrome and has never "suffered" a day in her life. She plays golf and has competed in tournaments against teens her age who do not have DS and beaten them. She has a zest for life and an infectious can do attitude. I am so very grateful that she is part of my life and feel richer for it.ReplyDelete