Date:20 September 2000 20:57
Subject:'Jodie and Mary ' - the debate

Hi there!

I have been reading the recent discussions on the various ‘disability’ lists, regarding the fate of conjoined twins ‘Jodie and Mary’ with great interest and have given the dilemma a lot of thought, and have refrained from expressing my views until now! I have also just watched the channel four reconstruction/report - which succeeded in giving strong arguments in defence of the profoundly impaired twin Mary.

There is no doubt that this has inspired a great deal of debate not only within disabled circles, but in all areas of society - and surely that act - that the ‘Mary-Jodie’ story has escalated and motivated the wider debate of disability and the right to life etc etc has also got to be welcomed.

‘Jodie and Mary’ and their legal and ethical battle to survive has succeeded in ‘bringing out into the open’ the ‘core issues’ the ‘moral dilemmas’ which for too long have been confined to the disabled community, able bodied parents and the medical profession - life and death decisions which were previously made behind closed doors - the general public remaining oblivious to the ‘kinder to kill’ movement at the heart of a (eugenical) prejudiced and discriminatory heath service.

So many friends of mine etc, most who are non-disabled have asked me recently for my opinion, on the fate of ‘Jodie and Mary’ - surely this ‘awaking’, this opportunity to make society aware of our issues has got to be an important moment in the disability movement.

Weather Jodie and Mary are separated with the loss of Mary or are denied treatment at the expense of both their lives - their lives will not have been in vain, for they will be remembered always for their contribution to our universal, collective struggle for the ‘Right to live and be different’.

So what do I think? - well I am extremely passionate in my own conviction that EVERY child despite the perceived severity of their impairment, deserves the right to life and the essential levels of support (medical/social) to enable them to reach their full potential - forget quality of life clichés - we have NO right, just as the medics and judges have no right, to attempt to judge, evaluate - label or tier another human being’s quality of life within the context of a medical or social stereotype.

I believe strongly in the right to ‘LIVE WITH DIGNITY’ as opposed to die with dignity - this is just an escape used by doctors to prevent having to provide a costly life long support service/medical care to what they see as futile and worthless lives. We live in a society now, which is driven by productivity and greed. Humanity, love and inspiration are not considered as worthy enough products to justify the costs of providing essential support services to people with multiple impairments, those classed, as is little ‘Mary’, as having ‘primitive’ brains.

But these beliefs of mine are so clear-cut and easy to stand by, when the person involved is an individual and does not share their body, their existence with another ‘genetically identical’ human being.

So what about Mary and Jodie? To separate them is to give Jodie the support to survive to sustain a life, however the consequence of this is the inevitable death of Mary. BUT if we do not separate them - are we not then denying them both treatment? This would be involuntary euthanasia? To separate is to murder Mary to not separate is to murder Jodie by denying her the treatment to prolong her life??? - a view taken by many.

I have heard much which contributes to a general trend which is seeking to almost ‘dehumanise’ Mary, to make a decision to separate more favourable - to cushion an eventual judgement - painting a picture making it seem ‘kinder to kill’ Mary.

Mary has in fact got a set of lungs and a heart - I had heard more than once that she does not have these in her body, but in fact she does - however they are completely non functional. She has also a brain - which we were told was dead - where in fact Mary has got brain stem activity, she can move her limbs voluntarily and can to a limited degree respond to touch - I heard this in the reconstruction of Mary’s defence on channel 4.

We were lead to believe that these two little girls were freaks - something short of human and that Mary was the ‘bad’ one, almost implying that she should not have existed because she was sapping the strength, the blood and life from her sister Jodie - who has the true claim to life. But in fact these two ARE individuals who would have been independent of each other had they not been ‘victims’ of a developmental impairment whilst foetuses in the womb. I got the impression that the debate has almost taken another dimension, it is no longer just about separation but the battle of Mary to be allowed an existence despite her multiple disabilities and so called ‘primitive’ brain.

Much emphasis has been put on the views of the parents. I personally do not believe that parents should have total control over life and death decisions regarding their disabled children. There must be an independent opinion sought and so I welcome that Jodie and Mary have become a legal issue.

Supposing a situation were a child was born with spina bifida or was brain damaged as a result of premature birth, and the parents advocated their right to allow their child to die by withdrawing feeding, or withdrawing of lifesaving drugs i.e. death by starvation/illness - many of us would not support this decision and would view this as killing the child, we would totally disagree and override the opinion of the parent in such cases.

But in the UK today parents do have the power to make such decisions often pressurised by medics and their bias views, I believe there should be an independent service available to parents run in partnership with disabled people, providing unbias support and counselling to allow them to make informed decisions - to allow them to see that there IS a future beyond the hospital, there are support services and if there isn’t then enable them to campaign effectively to obtain the services which there child requires to live a full a life as possible.

‘Killing’ is not a ‘kind’ option, it is the ‘easy and inexpensive’ option and is portrayed to parents as the ‘only’ option.

There has been an area to the Jodie Mary debate which I have not seen much written on and this is the fact, that universally, religion views disability as something negative, a hindrance and something unintended. Religion, especially Christianity gave rise to the connotations of pity and charity in relation to disability. Religion as a movement is fundamental to the disablisation (is that a word?!?!) of impairment. They gave rise to the deeply rooted prejudice that ‘the handicapped are better dead’. - therefore I have no respect for any religious argument which may be used to justify the murder of one or other of the twins.

The other main area which has been neglected is cultural differences and whilst I welcome enthusiastically, cultural diversity I no not support the prejudices which often accompany them. Do we support the prejudice in China’ s society against the birth of baby girls? - hence the ‘dying rooms of China ’ which horrify us all. In this culture as with many, being born female is not an impairment, but has been made a 'disability’ by the prejudices of that culture they are born into.

Many cultures especially in third world countries have very primitive views about impairment. Many cultures still view disability as a punishment by the gods for their parent’s sins. Children with epilepsy or learning disabilities are not so because of a chemical imbalance in the brain (epilepsy) or because of developmental problems, but many cultures believe such impairments are as a result of their children being possessed by ‘demons’ or ‘evil spirits’. We in the developed world reject such ‘primitive ’ ideas and replace them with science, medicine, enlightenment and awareness.

Where Jodie and Mary’s parents come from is believed to have a very negative view of disability and it is believed that there are very little support services available which could support Jodie, if she where to be allowed survive - would she be denied health care and education in her home country??? Hence this is why her parents came here for our help’. If they came here for our developed health care and medical advances then they also have to accept our cultural and social differences also, which claim a much more ‘aware’ and educated view of impairment/disability.

I am not saying we have it right or we have all the answers because we don’ t. But our differences - which are many - cultural/social/religious/technological etc etc - cannot be dismissed and must be taken into consideration.

I remain somewhat undecided on what IS the answer for Jodie and Mary - but what ever I think we have a right as a community and a society to feel a sense of duty to these two children - we have to accept responsibility whatever the judges decide. And we must seek to provide arguments to the debate which support our personal views.

To be undecided, to sit on the fence - is, I guess trying to shake off responsibility - so my heart tells me that these two should be allowed to remain together for as long as naturally possible until death parts them naturally - until perhaps one twin’s health dramatically deteriorates to the level where it immediately threatens the life of her sister, where it becomes impossible to sustain her life with medical support and where her death becomes inevitable and imminent, in this case the doctors should intervene and allow death to take its course with the weaker twin and to give the necessary medical support to the other to allow her to survive and maintain life. The question is - could this happen? when will this happen?

How long will the girls have conjoined together? weeks, months, years? But most of all WHICH TWIN WILL BE WHICH?

I leave my thoughts here and I would like to reiterate that these are my personal opinions and in no way am I trying to undermine the views of others - we have a duty to respect each other, listen and learn from what we say. I have. And this was where I am now.

In unity

Jane Stewart