Special People

Was watching BBC Breakfast whilst laying on my bed feeling like cr#p after the jab when on came the Alder Hey christmas party presented by Philippa Forrester.  Some of the children presented with debilitating but non-permanent illnesses and it was nice to see how positive they were in dealing with their misfortune.  On came Ricky Tomlinson as Santa and began handing out the presents, first to a little girl on chemo, then some kid with a limp.......and then, well now comes the point of me writing this.... to this thing on a trolley with a massive, dribbling and uncomprehending head.  It was human.... just.  Ricky ruffles its hair playfully and moves on to the next 'thing' in line.  Thing 1 hasn't got a clue where it is, why its there or who Ricky is.  Why?  'Cos its a special, monumentally disabled person, that's why!  

Nurse:  "Look Damian, Santa has brought you an action man and his fingers are clenched up permanently, just like yours"

Damian:  (dribbles)

Don't agree with it.  Why should that get a hospital bed or one in a care home when our grannies and grandads, who have contributed to society their whole lives get left in the corridor on a trolley?


SE are you a dick or what?  

If you need to lay in bed after a little jab, I'm damn sure those kids in Alder Hey are there cos they need to be there.  Having sick kids in hospital is not at the exclusion of old people.

Was there a point to your post? :-X
Yep, there was.  Try reading it again 'cos there was a distinction being made ... and it was quite obvious, if a little unpalatable :)
What do you suggest then SE....put 'them' to sleep permantly?   There was a little Austrian fella in the 30's & 40's who was a bit keen on such measures.  

I'm sure that you just put that post up for effect, given the time of year and the fact that most adults become over sentimental at the sight of injured/sick kids.  

Don't know if you have kids mate, but if you ever do father a child, I for one hope that he/she is born 'normal' as the saying goes.  

As Drops said, there was no point to your post.   Your post wasn't as shocking as you may have hoped for mate, just sad.  

You've probably never experienced anything like what the family of that child has went through and you probably never will.  You have no concept of the trauma and the sheer desperation experienced by the parents and families of such unfortunate children.  

'That' is a human being.   'That' has a family.  'That' only has a short time to live. 'That' is not responsible for it's condition.

I hope you had a great laugh when you put that post up.


War Hero
I agree with Ma, wish yourself luck that if one day you choose to have a child, it is born with no disabilities!
Would it change your point of view if it was to happen to your own? :-/
Actually Ma, there is little point to a lot of posts in the NAAFI bar and I wouldn't be the first to raise a contentious issue in here.  No, I don't have children but if I or you were to have a child that 'unfortunate', then I'm damn sure that, given the choice, we'd rather have a normal one.  Ma mentions the trauma and sheer desperation of the families.  There ya go!  My point exactly.  I'm talking about the severely mentally disabled here.  Someone please explain to me what it is that drives the families of such children through the trauma and desperation..Some of them know the child is bug#ered before it is even born and still go through with it despite being given the choice of termination!  There many more issues that are connected with this one and I'll agree that mine may be an extreme point of view but I'll bet ya I'm not alone.  And as a footnote Ma, 99.99% of the postings on ARRSE are for effect.  Wouldn't it be boring if no-one ever responded to one of your posts/topics?
On reflection, the broader issue here is embryo testing.  And guess what... I'm all for it! :)  Deep down, no parent in his/her right mind would choose Damian from my original post as a child so, through embryo testing and research, slowly eradicate the bad genes until each human is born healthy... for ever more.  The phrase 'civilised society' always seems to scream from the mouths of the pro-life lobby around now so let me just give you time to remember the last atrocity committed by humans on other humans.... there, didn't take long did it?  And I haven't even mentioned God the Creator yet....
S_E, you have succeeded in making everyone gasp and showing themselves to be actually very decent people behind their sometimes irritating posts......

I also saw a bit of the programme - I can only watch these in bits because they reduce me to a heap within minutes. You have asked a relevant question, and strangely perhaps, the most relevant one of all for this time of year.

The reason people have terribly deformed children, sometimes knowing what they are going to give birth to, and sometimes not knowing, is that whatever that child looks like, behaves like - it is still their child. In some ways, the bond between these children and their parents is the absolute distillation of the purest form of love there is.

The parents are just ordinary people, you and me (well, not literally or I'll have Mrs S-E knocking on my door.. ;)) and for some reason (and you can search for those reasons in every philosophical belief that exists on this Earth),  they are suddenly, and frightenly faced, with the awful and terrible prospect of their child (their child, I repeat............to a parent, their child is a living and breathing soul, inhabiting whatever body it is given) requiring an enormous amount of care.

Care.  The word, perhaps, encapsulates what is at the root of all good human relationships. And these people care, profoundly and deeply, for their children (however they appear, or in years to come, turn out).

For many people, it is 'care' that leads them to decide on termination - because they care about the quality of life they can offer their child, because they care about the effect bringing up a disabled child in a family with older, boisterous, healthy children, with another adult with whom they have a relationship which has it's own challenges.

The second part of your question being, why should these children take up resources that should be used for others eg, elderly people - because all life is precious. It's as simple as that. And no life is more precious than another's. No one should be left on trolleys in hospital corridors.

I have 3 healthy children, and I absolutely promise you, not a single day has gone by since they were born, that I haven't silently thanked whatever power lead me to them, did so.

I've just been discussing this with my eldest daughter (who is a very opinionated 11 year old, can't think who she gets that from) and she said "think of the thing that is the most precious to you, that you love lots, and then think of it bashed up and deformed - would you still love it as much as you do now?"

I think, S_E, you would.
Thank you Prodigal for your answer and for providing yet another top post :)  I am neither married nor a father and as such, am possibly finding it easier to have and maintain my admittedly extreme point of view.  However, if I were to imagine myself looking down into the eyes of my baby after having had a long list of its disabilites explained to me, I think I would have trouble seeing beyond that and I worry that outside pressures (society, social coventions, pro-life) play too large a role in determining whether such births take place at all which leave parents to pick up the pieces whilst smug pro-life campaigners sit at home congratulating themselves on another 'life' saved.    
That's an interesting point about embryo testing. There is a case in the papers at the moment about a couple who have a young son dying of a blood disorder, who have been refused permission to produce embyos who can be tested to see whether or not one of them can save their son (presumably the others who do not have the requisite qualities would be destroyed).

Nicola Horlick (famously wealthy City financier, one of whose 6 children died of leukaemia - she had the 6th to try and produce a child who might be a match to save her dying daughter) is an example of someone who tried basic 'embryo matching'. I suspect there are not many parents who wouldn't contemplate doing the same.

The argument used by the pro-Life lobby is that the example of the couple described at the beginning would be the thin end of the wedge and could lead to couples producing, and destroying, an endless stream of embryos until they managed to produce what they deemed to be the 'perfect' child. You might scoff at this but the reason most hospitals will refuse to tell you the sex of your baby is because there have been several instances of couples wanting to abort female children, for various reasons (usually religious).

I completely understand your viewpoint S_E (and I suspect that when you have your own children, your 'extreme' views will be ameliorated by the whole experience) - I think if I had been faced with producing a severly handicapped child I think I would have chosen termination. But, I would never presume to judge anyone on any decision they made when  faced with that situation. I am very pro-choice (ie I support a woman's right to choose a termination) but even with me there are limits. Iwas incensed to read of a woman (OK, she was very wealthy, had 3 nannies for her 3 children) who asked her female doctor for a termination because her 4th pregnancy coincided with her annual skiing holiday..............she took the female doctor (who had refused to sign off the termination) to court for acting in a 'judgemental' manner........she went on to find 2 doctors to sign it off (both male - I think the genders of the doctors just add a rather interesting twist to the story).

Something that has exercised my conscience for a long time, is the rights of the prospective father. Before I was married, I believed that the father had little or no right to any say in the decision to terminate (especially where the realtionship was fairly casual) but having been involved in a relationship that produced children (and maybe just getting older!) I am not so comfortable with my absolute belief as I was. In fact, putting myself in the man's shoes, it must be agonising if you want to keep the child.
Sorry about the sloppy SD, we've just had our 'Christmas day' and I am now unwinding with a very nice bottle of fizzy red wine (Banrock Station, sparkling Shiraz, Sainsburys, £7.99) - never had fizzy red wine and it's VERY good!!  :)


Having worked in the NHS for a number of years, including on Care of The Elderly and Paeiatric wards I have seen all sort of heartaches, especially at this time of year.  Many of the comments I would have made have cropped up already (particularly in Prodigal's posting) but I would like to add a few extra points.....

The parents of Damien are having a tough time too.  At least they know he is being well cared for - probably to a level they could never manage.  Perhaps they have other children who need to be cared for too.....  We often used to admit kids whose parents, despite every effort, just couldnt cope with caring for someone at home with that level of disability. Oh - and not all were born disabled, some had had accidents or developed illnesses.

As for making the decision to terminate a life based on a diagnostic test, can I recommend you read 'Under the Eye Of The Clock' by Christopher Nolan.  It is story, written in 1987,about a young boy who has a severely debilitating condition (I think it was Spina Bifida) and whose mother would probably have been offered a termination, had she not been in Ireland. It talks about him trying to come to terms with living with the disability.

The story is true. It is written by the boy himself (with lots of IT support) and it won a major literary prize. In his acceptance speech (read by his mother) he highlights that in certain countries he would never have been allowed to live........... and therefore never been given the opportunity to achieve literary fame.

And as for blokes being allowed a say in their child's termination - I know at least two guys who were (still are) GUTTED when put in that situation. One was told after the event, the other supported his girlfriend but deep down didnt want her to go through with it.  In both instances they were prepared to support the child & mum had it been born.  I do think that the bloke should be involved in the decision and that his feelings count too. But I don't envy anyone having to make that sort of choice.

Call me old fashioned, but I would rather we continue to evolve by 'Natural Selection' rather than genetic manipulation.We still dont know the long term effects- lets hope we are not creating problems for the future eh?
Spina bifida is, as you say Jezebel, a debilitating condition, not really what I'm talking about.  It still permits character, personality etc.  I'm also only directing my comments toward birth defects not later injuries.

Prodigal, I understand the points you made about embryo testing.  It is quite possible that some of the embryos  that were destroyed could have become great musicians or engineers.  One of them might have discovered a cure for cancer or aids, who knows?  But what is patently clear is that a foetus affected by the gene disorder responsible for cerebral palsy is going to develop into a burden.  Not its fault, granted, just an inevitable fact.  I think that a shortlist of conditions for which screening is permitted should be drawn up.  Parents could elect to go for this procedure.  Downs, cerebral palsy etc would be screened for and could then be eradicated in planned pregnancies at least leaving better genes in the pool to lessen the chances of serious defects in embryos resulting from unplanned pregnancies.  Clearly all planned conception would have to take place in the lab which once again raises the moral issue of terminating feotuses in order to save one or two but I could live with that as long as I remember the 100 million people who died in the 20th century alone due to wars and conflicts.  That is a lot of reproductive material! :)
Well (and Jez, please correct any medical mistakes I make here), there are already tests that can be carried out for Downs and, I think, Cerebral Palsy - or at least there are indicators.

Yes, you could have a list of illnesses and diseases you could test for - but some of these only give a probablity, there are not absolute certainties.

And don't forget, some parents will still want to give their child a few years of life, however limited it is. You talk about 'burdens' - all children are burdens!! In fact, all relationships are burdens! Any interaction with another human brings diffciulties that have to be overcome, unpleasantness that has to be endured, irritations that have to be suppressed..........I have a 9 year old trying to enage me in conversation whilst I'm tring to type this.......but the thing is, is that there are also commensurate rewards. It is concentrating on appreciating those rewards, counting your blessings, that will lead to compassion.....

and compassion is what makes it possible to love someone who really gets on your nerves! Or at least to feel that they are worth something in the eyes of someone,  or Someone, if you wish.

And then what if we include genes that lead to predisposition to violence? That child might grow up to be Genghis Kahn or Wellington! You cannot take nature as the only indicator of what a person will become - nurture is generally held to be the biggest indicator of how well a person functions.


I have never felt more disgusted when reading a post as I feel now.

As the mother of 8 year old child who is now classed as a special needs child, because she was severly ill when she was 4 1/2 after having some strokes, which lead to her having thrombosis of the cavernous sinus, thrombosis of the jugular vein, a partial infarction of the brain and knocking pretty heavily at deaths door.
Doctors exact words to me were prepare yourself for her to die if by some miracle she does live she will be a vegetable for the rest of her life.

I have been through the stage where my daughters fingers were clenched up permanently, where she was dribbling, where she had to wear nappies because she had no control over her bowels or bladder.
She even went through what is known as a mouthing motion, and bit part of her tongue of.
which believe me isnt a very nice thing to witness your child doing.

I was very lucky to meet a wonderful couple called Barry and Denise whilst my daughter was in hospital.
Barry and Denise adopted two little boys Tristian and Alex both of whom had special needs.
Tristian had a brain hemorraghe when he was born and was severley disabled, Alex has downs syndrome.
Barry and Denise truely are a very special couple and they taught me alot.

SE, I hope that when you do have children you dont have to go through what some parents do when they're children become ill.

As for my daughter, today with alot of help she attends the same primary school as one of her older brothers, it hasnt been easy, but I am bloody proud of her and wouldnt swop her for anyone or anything else in this world.

Children wether they are severly disabled or not are entitled to a hospital bed just the same as anyone else.

hooped. mk
Fuc#ing hell, with the exception of Prodigal, can you people  read?!  :eek: The point I am making is simple.  Old Retired Groundie is performing at his intellectual best and still failing to impress so I'll ignore him and Leanne just laughed so......  

Helmanx - I'm really sorry to hear about your situation but my comments are not aimed at you, your child or anyone else in such circumstances.  

Shall we leave it there?  Because I couldn't bear to go through another finger-jangling attempt at explaining myself again every time someone who hasn't read the previous posts jumps in and argues against something with which I have no problem.  Thanks to Groundie for not writing too much and thanks to Leanne for not insulting me.  I would love to have a child within a loving relationship.  Nothing new there but I would be happier with a 'normal' one.  I'd rather not have to plumb the depths of my reserves of compassion if I don't have to and I'm sure we are all the same.  For compassion read reaction to a fait accompli.  Thanks for your insightful comments Prodigal.  Despite appearances, I do now have food for thought :)


War Hero
No hard feelings mate..... ;)

Not saying I think it's right, as I disagree and believe that every human being should be treat the same as any other.......Have read your posts properly and understand that everybody has different views on all scene's of life, and your entitled to say your opinions aloud like everyone else on this site. All I say is it's one of them touchy subjects that nomatter how normally said......Will of course touch and hurt a few hearts. ;D ;)


Far be it for me to critisize, but until you have had your own child, do not judge others for their love of their children.

I was unfortunate enough to lose my first child, a son who was stillborn.  I held my son and never wanted to let him go.  The intense love and feeling of helplessness was overwhelming.  It is something you cannot explain until you have been through it.  Now I have a 4 year old Daughter, and I now understand the extreme measures that people go to, to protect ther children form harm and danger.

I am glad that I do not have a disabled child, but if I did, I would love it no less than either of my other two children.  I can fully understand why parents of even severely disabled children only want the best for their child.  Even if that child only gets to actually enjoy one second of it's life, all the effort would have been worth it.

Please print your comments off and keep them.  Then one day when you are a proud parent, read them again.

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