Most Important Role of My Life

Some things are so important that you barely know how to begin to describe them. 
It's almost as if saying it aloud makes it even more daunting.

I have been asked give evidence in a Parliamentary Inquiry into the current UK Disability Abortion Law to a multi-party commission.

So I will be travelling 5 hours each way for what might prove to be the most crucial 5 minutes of my life. The power to change things in a very real way is at our finger tips, 'we' being a team of 'experts' including Sue Buckley (DSA) and Dr Elizabeth Elliot (DSRF UK).
I want to speak for everyone of us and for every one of our children.

Now abortion is a very emotive subject full stop. 

My 3 nights solid of research have dug up opinions on every single point of the sliding scale between not approving of the contraception to believing that every woman has a right to decide what happens to her body right up until the point of birth regardless of her reasons, and everything in between. Personal opinion, religious belief and background all make us different and I respect that. On the other hand I have read things I really rather wish I didn't know.

This debate is not about that. Here are the facts as I understand them:

This debate is about the current UK 1967 Abortion Act (similar exists in some US States too) which limits terminations to 24 weeks. 24 weeks that is, unless 

'there is substantial risk that the child might be born seriously handicapped'. In this case abortion is permitted at any time up to and including during birth. These are known as Group E abortions.

The law does not define 'substantial risk' or 'seriously handicapped' and they can be interpretted differently by doctors or parents. Down Syndrome is included.

Further digging around revealed that annual figures for Group E abortions are fairly well hidden. There are discrepancies in the numbers recorded depending on who you ask.

Many of you have experience of being offered these late stage abortions, maybe some have felt pressured into them. With current early testing there seems no earthly reason to allow them.

What we are setting out to do is bring equality of rights to the foetus with a disability.

Stop all late stage abortions unless a mother's life is in danger.

Ensure proper unbiased support for families at point of diagnosis and ensure they are given full facts before making more informed decisions. 

Establish the intention behind the law and how it is interpreted by medical practitioners.

And of course state that Down Syndrome is not a 'serious handicap'. That goes without saying.

Wish me luck.

H x

For a more personal stance, from the archives: read Diagnosis Down's 


  1. Hayley, I have all confidence in you and believe that you will be the voice of reason. Why is Downs Syndrome included in Group E? Natty is living proof that this decision is utter rubbish! I wish you a positive and productive mission.

    1. Thank you Jane, and for your continued support. People with disabilities are so often seen as a sub class anyway. It has to stop x

  2. I was wondering what the definition of a 'serious handicap' is. Seems fuzzy. I am pro-choice but late stage abortions (unless the mother's life is in danger) are completely unnecessary and frightening. My husband, a Dr, agrees. This was an enlightening post!! And good luck to you, what a perfect person to do this. x

    1. Thank you. I will not lie, I am nervous. It seems there is no clear definition of 'serious handicap' included a cleft palate case last year. I too personally am almost sure I would not have had a termination had I known, but 92% of parents expecting a baby with DS do. I think this reflects a 'railroading' by some meds and a general fear and ignorance in society about what DS really means today.

  3. This is big stuff. I've just been reading a book about the changing attitiudes towards people with disabilities and how far we have come (although they do admit that we still have a long way to go) Things like this show that there is still a very, very long way to go. It's great stuff that you are doing, my prayers are with you.

  4. Good luck. You are a fantastic speaker and will be able to get your point across clearly and concisely. And of course, never forget that YOU ARE RIGHT!! x


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