Sunday, 14 July 2013

Abortion on the grounds of disability is a matter of choice.


This morning on Sunday Morning live they asked the question “Should abortion on the grounds of disability be banned?”

My answer to this is no. Jonathan Bartley and other campaigners who are also parents of disabled children spoke strongly in favour of the human rights of disabled people and the debate covered the topic well, except for one salient fact which I think was missed.

Why should the perceived rights of the unborn outweigh the human rights of the living?

The issue of living disabled people was completely conflated with the rights of an unborn fetus with a disability. To the extent that beautiful photos of one campaigner's daughter with downs syndrome, were placed on screen. She is a living child, no one with any decency would not want her to be here.

I felt that this use of photo’s played emotionally into the hands of the religious right who are making far too many trips into the business of personal choice as it is.

I tweeted about it. “A uterus carries a foetus, a pram carries a baby” 

Language such as “baby” and “child” are key ones in the anti-choice tool box and are deliberately emotive because it makes a claim that  termination is killing a child, not ceasing the activity of rapidly dividing cells.
It is making a decision not to become a parent and whatever grounds this heartbreaking decision is made upon,  it is one entirely and solely for those directly affected.

The aspect of disability and abortion is taboo because it challenges notions of acceptance and disenfranchisement of disabled people. It suggests they are less than and deserving of eradication. This isn’t the case. 

Deciding not to parent a child if you feel you can't cope, because they have a disability is a responsible thing to do. 

Not because there 'shouldn’t be disabled people', but because if you don’t think you can meet the challenges of parenting a child with a disability before they are born, you will be broken by the challenges when they arrive.

A child must be loved and must be wanted. A disabled child needs a thousand times that level of commitment. I know this because of my daughters.

I love my children to distraction but the truth of parenting a child with highly complex needs is a very harsh reality indeed. Not all disabled children are non violent and I’ve had several bones broken as a carer. The costs are huge and the sacrifices are endless. Everyone knows the challenges carers face and everyone knows we are supposed to remain stoic and silent and keep on saving money for the country. There is little support and less understanding and if you want to know how much carers get in terms of government support it’s about £40 a week.

I calculated that the costs of me caring for both of my girls was approximately £180,000 per year.

I think on average I slept for about 4 hours a night until last September when my daughter had to go into a residential school after refusing school, respite or even to leave the house. Her behavioural problems were unmanageable and she is thriving at her new school.

You do it for love and you keep doing it when all hope and mental strength is gone. You fall into a spiral of belief that no one will help you and no one does. Over stretched social services departments are under resourced and over worked and then the hatred when you leave the house is unrelenting.

Some campaigners and activists are suggesting that termination on the grounds of disability is in fact Eugenics .

It isn’t. Enforced abosrtion would be Eugenics but there are many like me who would fight any suggestion of that tooth and nail.

Abortion in this regard I feel is simply about recognising and evaluating your own choices as a living person, appreciating your limits and deciding, responsibly that you will not be able to manage the inherent challenges.

Ultimately the rights and freedoms of women are being eroded on the issue of abortion. If you decide to terminate, on the grounds of disability or not, that’s choice. If you try and enforce that decision upon others, through legislation, that’s scary.

I love my children and my calling for a protection of choice for women in no way impacts on my love for them. I campaign on disability issues and hate crime against disabled people. I choose to campaign for the living, not for the unborn and that encompasses living women trying to make difficult and heartbreaking choices.

Making a responsible choice does not encroach upon disabled people or disability rights in anyway and forcing women to carry to term an unwanted child will cause deep distress for the woman and result in placing that child in the care system notoriously lacking in adoption rates of disabled children as it is.

The parents may decide they feel duty bound to care for their child. They may feel a overwhelming sense of responsibility and love but even if this is the happy outcome it must be recognised that the divorce rate for parents of children with a disability is higher than the national average.

The woman contemplating an abortion may not be in a relationship. This enforced pregnancy on the grounds of disability will mean that she must care for the child entirely alone. Extended family and friends peter away to virtually nothing in many cases.  This additional isolation is devastating.

I felt it and I’m married.

There are already too many stories of women so broken by raising a disabled child in a society, which does not meet the needs of disabled people and carers, that they take the harrowing decision to kill their child and kill themselves.

These are not scare tactics like the myth propagated by anti-choicers like a “fetal scream” these are the realities of life.

The fact is these are all factors to weigh up when making an informed decision and an informed choice. No woman must lose that right to choose and no amount of choice of when to become a parent impacts on the human rights of disabled people. 

We must fight the horror of Eugenics ; this isn’t that.

It’s detailing that the human rights of living people shouldn’t be eroded by perceived rights of those yet to be born. 

7 comments:

  1. Thanks for such a thoughtful blog Nicky.

    I think though it is worth mentioning what today's debate was addressing specifically, and that is the current situation under law.

    As the law stands, if a woman feels she can't cope - for whatever reason (disability or otherwise) - she can have an abortion up to 24 weeks.

    However there is an additional ground for abortion under the present law, and that is not related to whether a woman feels she can cope or not. The grounds are simply whether the child is likely to be disabled or as the law states: "that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped". Accordingly, the time limit is different, and there is no time limit on abortions on these grounds. It can take place up to birth.

    This is not semantics but an important distinction in the area of disabled rights. Under abortion law, just one 'protected group' is singled out for special treatment under abortion law - the disabled. This is not based on whether a mother feels she can cope (as that is covered by the other clauses). It is simply because they may be disabled when born. (ie when they are no longer a fetus in a womb, but a baby in a pram) It is based directly on views of disability post-birth.

    There is a whole area we could go into about how this is part of the 'medical model' (as opposed to the 'social model') of disability that disabled-rights campaigners have been fighting to get rid of for years, and so central to the oppression that disabled people face. But disabled rights campaigners have made this point far better than I ever could (and have linked it to abortion themselves - for example Micheline Mason who has been at the forefront of the struggle for decades) so I won't go into it here!

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  2. Great comment thanks Jonathan. Yes there is huge debate around the various models of disability- medical verses social and indeed bio-psycho-social model.

    No semantics no, just the issues of the rights of all people being equal in life rather than pre-birth.

    As I understood it the question was around whether abortion on the grounds of disability should be banned, I don't feel that it should. As this is making blanket policies which don't allow for individual choice and decision making. Hence my response.

    There is as you say a great deal of campaigning being done on the area of abortion and disability by campaigners and feel it's useful to add my voice to the debate which people feel nervous to articulate, for fear of repercussions.

    As you know there is no absolute "right or wrong": over such crucial issues but instead opinions and perspectives. Time limiting is a different issue to the one discussed today, and I'm referring to a broader issue around choice for women being maintained given the religious right's continued lobbying in this area..

    It's so important that we are open to debate and keep the debate open to all. It affects everyone after all. Any change to legislation needs to address this.

    Thank you so much for your comment.

    Very best Nik xx

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  3. Hello Nicky,

    This is an interesting debate and your article is equally intriguing.

    I run the website beingdisabledinanormalsociety.co.uk and have put a link to your article on our 'Latest News' page. I'm hoping you don't mind. Please let me know what you think.

    Best,
    Dan

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  4. Hi Dan no that's fine All best Nik

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  5. So you are pretend disability rights campaigner who actually believe we are better off dead. God please have mercy on your daughter and I help social services intervenes to protect her. You previously said Fiona Pilkington did nothing wrong murdering her daughter so if you get a bout of middle class self-pity, how safe is your daughter? For your react badly, just read what you have written about all the excuses so parents has a right to kill her burdens!

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  6. This is a thoughtful post Nicky - though I don't agree. Partly because I believe a foetus is a human being, and fully formed from 12 weeks. I understand why women have abortions but I don't think it's right. But I have a particular ethical concern about disability, because it seems to me acceptable in society to abort a healthy disabled child because they don't want to be a parent of a disabled child. That seems wrong to me because it is saying a disabled child has less worth than a non-disabled child. I recognise of course that having a disabled child brings a whole lot more complexity to life, and that it's much harder work (and you of course know this much better than I do) but I still believe that child has the right to life. And if families of disabled children had the right support, then having a disabled child would not seem such a difficult choice.

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  7. Simon Stevens- It is difficult to believe your comments.

    I am a person disabled since birth. I have wonderful parent carers but I completely agree with Nicky's view.

    If a parent feels that they need to abort a disabled child because for whatever reason they cannot cope with that future child's needs as a disabled person then they should abort the pregnancy. Sad as the fact sounds it is true that aborting a pregnancy is better for everyone than hurting a disabled child once born by not giving them what they need.

    That's why abortion on grounds of disability should not be banned.

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