Today's Observer

[smallworld]

Me too, and I started this b****y thread !

I had no idea it would go off at this tangent, I posted it as a 'piece about carers'.

Apologies,

 

wac

[call me jaded]

With regard to the way Patrick has been de-humanised, I think the defence lawyers have portrayed it that way for many obvious reasons. Rather similar to the humiliating application process for DLA, the case has to be presented in a way that highlights the negatives.

 

I actually agree with Lucas for the most part (role of carers aside). It's all a sickeningly slick sleight of hand that shifts emphasis away from what was not offered to Patrick.

 

I'll say this again.

 

The way forward from this is the right to independent living. It would have saved Patrick and it would save others.

[Kathryn]

... In a nutshell, my main point is that we shouldn't allow anyones life to become a footnote. We are all far too valuable for that.

Well said.

[oracle]

I am still uncomfortable with the notion that acknowledging the needs of carers is dehumanizing the child, but I have to respect those of you who see it in those terms.

 

Me to Simon

 

Carole

[Malika]

Hi to all

 

I agree with you Jaded, once again I want to repeat how dehumanizing the whole system is as to get anyform of help you have to make it look so horrible and still anything they find out of positive about the cared for comes back to the carer like boomerang with comment like "things are not that bad then", like "come on you don't need as much help as you said" Sorry but it is the way the system works there is no prevention <'> only emmergency response and things are not objectively measure in term of everybody's need and how to balance everybody's life but just in term of "how long do you think we have before the cared for or the carer have a nervous break down and do something which may put us in trouble" nothing to do with the need of the disable or carer merely to do with the need of all sorts of professional involved to have and finish a smooth carrer.

 

While people on incapacity benefit for example have to be made feel guilty about how much money they take out of the taxe payer pocket and before them was the single mum and before the jobless and it is always the most vulnerable who are expose and dehumanized in such a way because societies seems to enjoy putting others down make them feel better I suppose.

The fact that this kind of approach does not seem to solve the real problem is overlooked because it seems to be cheaper at the end, and the money can be spend in much more useful and purpusefull endavour like..... you can all decide by youreself what could fit there, possibilities are many. Faites vos choix rien ne va plus....

and be aware very soon when most able disable will be have a job the one who can't will be expose as draining the money out of the public purse... or may be not ???

 

All of you take care. <'> <'>

 

Malika.

[Lucas]

Anyone who did actually bother to read what I said earlier will know that Mossgrove and others are not even arguiign with what I said, but something which they keep repeatedly insisting I said.

 

I want them to quote me now, seeing as I'm having trouble working out who they are talking to when they say things like 'You're portraying it like such and such...'.

 

How do I engage with the arguement Mossgrove when it is a response to something I never said?

[Lucas]

You seem to be saying that a carers job is just to put up, shut up and get on with it, and on the way remember to be a little more grateful for all their childs positive attributes, and on no account should they ever imply there are some negative ones

 

I can't f*****g (Edited to remove expletive) believe it that I can say one thing, you can say I said this and then everyone accepts your version as what I said. Get a clue.

[call me jaded]

The problem is NOT that carers are neglected. The problem is that disabled peoples' need for coping carers is being neglected.

 

Carers are neglected, Lucas. We're in it together.

[bid]

I agree, Lucas...you didn't say this at all

 

And none of us said that acknowledging the needs of the carer dehumanises the child.

 

What we said was that Patrick's portrayal in the media dehumanised him and Baddad highlighted that all our children could be viewed like this if we are not careful.

 

Bid

[CarerQuie]

I have come late to this thread and can see merit in both sides of the argument.

 

I have an 86 year old friend (NOT a typo!)who is the Carer for her Down syndrome son.Although he goes to a day Centre,he still lives at home with his Mother.

 

As yet,there is nothing in place for him for when my friend dies.The worry is that SS will then be trying to arrange a package of care for her newly bereaved son when she is no longer around.She knows and loves him the best and will not be involved in what happens.xx

[mandyque]

That's a shocking and sad situation Carerquie Why is it that we can see that your friend and her son need to prepare for the sons future but social services can't? At 86 years old most people would need somebody to care for them, never mind them caring for their adult child. At 33 years old I am worried about what would happen with my daughter if I was unable to care for her any more, that lady must be very worried. Her son has the right to know what will happen to him and to make the transition as painlessly as possible when the times comes that his mum is unable to care for him any longer, he will have enough to cope with!

[CarerQuie]

She is also a widow.She has another son who lives some distance away but really has little involvement.I think it's so sad and a huge worry.xx

[asereht]

I agree it is hard for carers but I am with lucas and bid on this and totally agree with baddad. Our kids may be seen as the problem, which could be dangerous when looking for the solution.

 

Carers needs should be met by first and fore most meeting the needs of the person being cared for .

 

 

The needs of the carer must not be seen as the most important. My sons needs will always come before mine as he needs more than I do . I for the most part can take care of myself.

 

If carers are having major problems its the person being cared for who is getting let down by the system, NOT the carer. Just my opinion. Hope I don't offend anyone.

 

Theresa

[bid]

I couldn't agree more, Theresa.

 

Bid

[mossgrove]

If carers are having major problems its the person being cared for who is getting let down by the system, NOT the carer.

 

That's the bit that is causing me to have trouble with this thread.

 

I really cannot get my head around why so many people are seeing the carer being let down and the person being cared for being let down as mutually exclusive. Surely both people are being let down? As soon as you say it must be one or the other this is where the disagreements start.

 

I'm not trying to be controversial or respark yesterdays debate, I just cannot grasp why it needs to be seen in terms of one and not the other, it just doesn't make any sense from where I am sitting.

 

Simon

Edited November 9, 2005 by mossgrove

[Lucas]

Carers are neglected, Lucas. We're in it together.

 

You quoted this,

 

The problem is NOT that carers are neglected. The problem is that disabled peoples' need for coping carers is being neglected.

 

You answered this,

 

The problem is NOT that carers are neglected.

 

But ignored this,

 

The problem is that disabled peoples' need for coping carers is being neglected.

 

Had you taken as it was written, you would know that I am in agreement that carers needs are not being met. What you didn't understand is that the carers needs as a stand-alone problem is NOT the problem here.

 

Someone else who obviously didn't read a thing I wrote but instead other peoples' version of it said that I shouldn't be looking at the needs of the carer in opposition to the needs of the caree. I'm not, but you are. When you treat carers needs as a stand-alone problem, you make disabled people a factor in that problem and then they end up being a factor in an easy solution, as is what has happened in Canada and America. They don't want to support and Autistic population, so they will eradicate it.

 

The problem is that a disabled person did not have a coping carer as is their need. If the problem is that carers are not having their needs met, then the disabled person is being forced to waiver the premise of inherent value as a human being.

[Lucas]

Mossgrove, it's because YOU keep putting it in those terms but you've ignored any attempt to point out how this is.

[baddad]

Hi Mossgrove/ Lucas -

God, i hope i'm not opening a hornet's nest here - that is the last thing i want to do...

I think your are both fundamentally in agreement, just looking at things from a slightly different angle.

BOTH the person in need of care and the carer's needs are being ignored. By definition though, it is the needs of the person being cared for that are the relevent factor, because if society supports THEM, both sets of need are met.

The bigger issue is that of representation - by viewing the support needs from the carer's perspective, you devalue the person they are caring for by viewing their needs as a secondary or side issue...

At the risk of being melodramatic, I'll risk putting (a hypothetical) 'myself' into the equation. If 'I' acted as the mother in this case acted, would I want people outside of the situation to view the act purely in terms of the 'difficulties' my son's CONDITION (not my son - 'cos If his needs had been met by better social responses to his condition most of the difficulties wouldn't have been there) had created, and use them as a justification for what i had done? No. My son, all other issues aside, was a wonderful, beautiful, creative human being, deserving of every opportunity that every other human being (should) have...

 

Acknowledging the needs of carers does NOT dehumanise those they care for directly, but viewing their needs in isolation does, because it implies that the disabled person is the cause of that need, when it's actually society's 'I'm alright - you get on with it' response that's at fault.

 

Taking that 'hypothetical' one stage further - and perhaps even more emotively - If the situation had been that a socially deprived, isolated, depressed mother had killed her NT child, she would NOT be represented by the media as a victim, no matter how desperate her situation might have been. Even further... had she been found to be suffering from some 'mental illness' at the time (I'm talking schizophrenia, manic depression etc - not the kind of depression that actually gets treated in this country) the world would have been baying for her blood.

 

I don't know if that's helped/hindered/annoyed, or made no difference whatsoever, but i would ask, please, if we could perhaps let the bits we disagree on lie, and concentrate on the real issues:

 

A human being died.

The person responsible for that death will be unbearably burdened by that loss, and her actions, for the rest of her life.

The needs of disabled people are not being met, and - by extension - the people who struggle to provide care for them are also being neglected.

There is no reason why any of this should have happened.

 

L&P

BD

[asereht]

BOTH the person in need of care and the carer's needs are being ignored. By definition though, it is the needs of the person being cared for that are the relevent factor, because

if society supports THEM, both sets of need are met.

 

A human being died.

The person responsible for that death will be unbearably burdened by that loss, and her actions, for the rest of her life.

The needs of disabled people are not being met, and - by extension - the people who struggle to provide care for them are also being neglected.

There is no reason why any of this should have happened.

 

L&P

BD

Simon ,

Sorry I don't explain myself very well baddad just said what I mean . I don't see carers and people being cared for as seperate, it's just that without the person needing care there would not be a need for a carer. In fact they are both in need but if the disabled person gets the care needed then so does the carer.

 

Other people on this thread seem to think from what I can gather ( I may be wrong) that the carers needs are more important. ( at least thats the way it comes across)

 

 

There are some people in this world( certainly not on this forum) who thrive on being the carer so they can moan to anyone who will listen how hard their life is and don't really want things to get better.

If the media concentrate on the needs of the carer these people will jump on the bandwagon ,cause a huge fuss and somewhere along the way the disabled person is forgotten about or worse even blamed for the problems of the carer.

 

I do think both the carer and the person being cared for are equally important but help the disabled person and the carer is almost certainly helped- help the carer and depending on what the help is the disabled person may or may not benefit.

 

Again no offence intended.

 

Theresa

[call me jaded]

What you didn't understand is that the carers needs as a stand-alone problem is NOT the problem here.

 

I am disagreeing with you Lucas, not failing to understand. I did actually understand what you said.

 

What I'm saying is that carers needs are genuine and should be addressed as a separate and equally important area requiring support as those of the cared for.

 

It's about recognising a legitimate claim.

 

I'll go back to my serfdom now.

[smiley]

There is no reason why any of this should have happened.

 

L&P

BD

 

 

My thoughts entirely.

[Lucas]

Thank you then Jaded for ignoring the lessons of history and making this world an ever more scary place for people like me than it already is. It's only in recent times that places like Canada have become so hostile to disabled people and it has always started out like this; when people start seeing the needs of a carer as a seperate issue to the needs of the caree. I give it less than ten years before your 'legitimate claim' is expanded to include stamping out the disabled people that cause you such suffering.

[call me jaded]

Where have I said the needs of the carer supercede those of the cared for?

Edited November 9, 2005 by call me jaded

[mossgrove]

Lucas

 

You are very sensitve to the point of swearing and outright abuse if you feel people are reading things into your posts that you did not say. Please consider how some of your reactions to other peoples posts may be affecting people who are trying to participate in what is supposed to be a good-natured discussion.

 

Simon

Edited November 9, 2005 by mossgrove

[Lucas]

Where have I said the needs of the carer supercede those of the cared for?

 

As for being a carer, I generally put my own needs first.

 

But this isn't the point, the point is that you are creating a mode of comparison where it's the needs of the disabled VS the needs of their carers, this in turn creates an appeal to the unequal middle. Those who didn't bother reading my posts said it was me doing this when it was you.

 

You are willing to jeopodise someone else's future just so you aren't offended by statements like "A disabled person's needs include a coping carer if they need a carer". The needs of a carer and caree are not seperate issues, if you seperate them the percieved weakest link will suffer as the mostly able society tries to justify an increasingly utilitarian unequal middle.

[call me jaded]

This is what I said in full.

 

As for being a carer, I generally put my own needs first. This was a lesson hard learnt, but someone somewhere likened it to the advice you get about an emergency on an airplane: when the oxygen masks come down, put on your own before going to the aid of someone else.

 

It actually makes me a better carer to do this, raises my status with the rest of the family (who don't see me as a general dog's body, more a general) and allows some kind of fulfillment.

 

It's not all that different to "A disabled person's needs include a coping carer if they need a carer".

 

I have not said my needs cause the needs of the cared for to be set aside (which is what supercede means).

 

What I do believe, though, is that a carer is entitled to a life outside of caring, and that is why the two (the carer and the cared for) need to be treated separately.

 

If you wish to interpret that as a wish for some kind of 'disabled cleansing', I can't stop you, even though I think it a ludicrous interpretation.

[Lucas]

Ah now you've moved a goalpost.

 

What I do believe, though, is that a carer is entitled to a life outside of caring, and that is why the two (the carer and the cared for) need to be treated separately.

 

Those are their rights as people, NOT as carers.

 

It is not an opinion or an interpretation when I say seperating the rights of carers from the rights of the disabled; it has enough precidence in history to be demonstratably true. But you still insist on your right to not be offended is greater than a disabled person's right to not be placed in a problem catagory just because they are disabled.

[call me jaded]

No. I'm not insisting on anything. I am putting forward a view that disagrees with yours.

 

I've been talking about carers as people all along, it would be dehumanising not to, wouldn't it?

[barefoot wend]

Reading this feels like I've got caught in a family argument where the people you care for can't agree and end up hurting each other when they really don't mean to.

 

Barefoot

 

P.S. Could this be YET ANOTHER very patronising post from the foot? I'll get my coat.

[baddad]

Reading this feels like I've got caught in a family argument where the people you care for can't agree and end up hurting each other when they really don't mean to.

 

Barefoot

Just because that deserved repeating...

[call me jaded]

Don't worry. I think I've probably run out of things to say, at long last.

[asereht]

Lucas and Jaded,

I always read your posts with interest and find them helpful so I would like them to continue but I think you both may need to agree to disagree before this one turns nasty and one of you decide to go away and not bother joining in on other threads.

 

Please feel free to tell me to keep my nose out but while the thread is devolping into a healthy debate with most I think with both of you it is getting a little personal and feelings could get hurt.

 

Theresa

 

P.S And Barefoot you thought you were patronising!

[asereht]

Don't worry. I think I've probably run out of things to say, at long last.

Sorry jaded you posted while I was writing and I just seen it now.

[call me jaded]

I've tidied my room. Am I still grounded?

 

 

 

 

Aaaawwwwwww!

[Lucas]

I'm afraid I can't agree to disagree with harm to myself.

 

Jaded is not putting forth a view that disagrees with mine because I've yet to see any incling that she has even understood it, her saying she has doesn't make it obvious.

 

A man dies and all the sympathy is given to his killer, but whilst you don't agree with his dehumanising you are supporting it anyway and when someone tries to explain to you how this is your response is to cover your ears and sing "laaa-laaaa!".

 

Every attack on the rights of disabled people with large public support has been in the form of defending the rights and needs of non-disabled carers in recent years. That is why it can't be regarded as a seperate issue. It does pit the rights of the disabled directly against the rights of carers and then people start saying "A balance must be struck!", which usually means disabled people lose rights because this unequal middle is selected by non-disabled people.

 

I don't think Jaded is going to percieve this issue with the same desperation and insight as others unless she one day finds herself being cared for and that carer makes decisions on her behalf which she can damn well make herself.

[mossgrove]

Lucas

 

I don't think Jaded is going to percieve this issue with the same desperation and insight as others unless she one day finds herself being cared for and that carer makes decisions on her behalf which she can damn well make herself.

 

I disagree with the way you have said it, but it does point to why we are still debating this.

 

The problem is that not everyone shares your interpretation of those events, just as many people on this thread do not share mine.

 

Those of us who do not share your perspec tive are not covering our ears and going 'Blah Blah Blah!' we have simply looked at all the facts in out possession and come to a different conclusion to you. I feel a carer/cared for relationship is in many ways a partnership and not a service provider/service receiver one which is my perspective based on my experiences as a carer. Your concerns are more focussed on the person being cared for, which relects your experiences as a person being cared for, and those of the people you know.

 

I understand that is frustrating for you, but there is not much I can usefully add to the argumnent.

 

It does not mean that the people who disagree with you are bad people, it does not mean thay do not care deeply for those they care for, and it does not make them bad carers, and it is certainly not part of a co-ordinated attack on the rights of disabled people.

 

We agree on more that we disagree on, as Baddad has said. This thread is in response to a tragedy that should not have happened.

 

As you have said, we do not have experience of being cared for. As I said earler, I do not believe that you know what it is like to be a carer, and this may be why people in this thread have differing perspectives, it is entirely natural when people are processing different sets of information in order to reach their conlcusion, and we may each interpret the information we have slighty differently.

 

This is why, ultimately we must agree to disagree.

 

Simon

Edited November 10, 2005 by mossgrove

[Patch]

My mum is 70 and has been a widow for the past 20 years. My sister (40) is paralysed from the waist down (from birth). For the past two years they have sought help from the social services for 'toileting', but the toilet problem has not been solved. Whilst doing that, they have raised all sorts of questions about future care for my sister if and when my mother passes on. They have told them there is NO WAY anyone as a paid carer would do the things my mother has to do and they have assessed that 4 paid carers will be required to do what my mother does! However, no support at all is being offered and the toilet problems have been made worse, all increasing stress for them.

 

Help is not there for the disabled person.

 

Help is not there for the carer.

[call me jaded]

That is a total disgrace Patch.

[nellie]

Patch,

 

I strongly advise you to contact The Princess Royal Trust for Carers. If required they will act as an advocate for the carer.

 

http://www.carers.org/

 

Nellie xx

[Lucas]

Your concerns are more focussed on the person being cared for, which relects your experiences as a person being cared for, and those of the people you know.

 

That is patently untrue, people still seem content to stuff words in my mouth it seems.

 

You are not a carer without someone to care for.

 

You cannot see the profound and wide reaching effects that truth has. It doesn't matter if what I have said and you have scoffed at has happened in recent years elsewhere, you will come to your different conclusions but the one thing you haven't done is justify why you have. You seem to think the mere fact that you have a right to an opinion is justification enough. But an opinion CAN be harmful, just because you have a right doesn't mean it is right.

 

I'm also getting annoyed by people who keep saying I'm not a carer, I don't even know what exactly they mean.