Today's Observer

[smiley]

Patch <'> <'> <'>

[mossgrove]

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

 

Unless I have misunderstood things completely you are not responsible 24/7 for an adult or child with Special Needs. Not only in terms of day to day care, but in terms of organising clinic appoinments, negotiations with schools, applications for statments, primary responsibility for ensuring the righ benefits are received, transport, sleeping patterns, organsising and planning the day, clothing, accomodation, finances, emotional wellbeing, personal hygiene, social activities and loads of other things as well.

 

Your interactions with the carer/cared for system have been (And I profusely apologise if this is not the case) as a reciever of care from a carer. Your experiences will have differed from mine , so we will both have our unique perspectives from which we have formed our opinions. I am not expecting that you will share my views, or even be happy about them. Plainly you do not accept them, and you are not happy about them, and I accept that. I am just asking you to accept that I may not, even after extended disussion, see things the same way that you do. It is not a matter of right or wrong, it is a matter of accepting differences.

 

Simon

 

Simon

[Lucas]

No, it is a matter of right and wrong and every reason I've given for why that is has been side-stepped. When you support a line of reasoning which when followed through to it's logical conclusion = Canada-style disability rights, that is wrong.

[Kris]

[mossgrove]

I disagree that to look at a carer as having needs independent of the person being cared for inevitably pits the rights of the disabled against the rights of carers, which is I think that central thread through your discussions.

 

I do not think it is true because carers have a right to have a part of their lives that is not directly to do with the person they care for. They are people in there own right as well as caerers. When those other needs are met, I believe that the quality of care improves, therfore there is no conflict with the rights of the disabled person. You could of course argue that in meeting the carers needs you are meeting the needs of the disabled person, and they are not seperate after all.

 

What I cannot accept is that the carer only has an entitlement to have their needs met because it helps the disabled person, but has no right to be have their needs met simply because they have those needs, nor can I accept that acknowledgement of a carers needs amounts to a statement of intent to ride roughshod over a diabled persons needs or marginalise disabled people from society.

 

I will repeat one last time. A carers needs can be acknowledged without threatening the rights of the disabled person. That is what I belive, it is not what you believe. I have yet to be conviced by your argumnents, I have failed to convince you.

 

You are entitled to your opinion that I am wrong. You are entitled to think what I believe is unacceptable. It is simply a fact that you will not change my mind as we see things differently. Therfore we have to agree to differ.

 

Simon

[Lucas]

Will you please work it out: You are not a carer without a disabled person to care for.

 

Meeting the needs of the disabled person benefits the carer automatically, but meeting the needs of the carer does NOT have the same effect on the disabled person. That is why disabled Autistics are in a $h!t bowl.

[Malika]

Hi Lucas.

 

Lucas if I understand well you think that carer should not get all the emphaty and have too much right in deciding for the persone they cared for while the cared for have no recognition for their suffering and no right to decide about what they want to do in their life.

You seem to think as well that the attitude of the carer is wrong because their position as a carer depends of the fact that they must have a persone to care for what you implie or may be wish to see is a position of dependance of the carer respective of the cared for I mean by this that you seems to believe that the carer is in need of the cared for while the opposite is true if we do not take into account the relation of love between the two which make the carer in need of the cared for not for practical reason but psychological one. May be you think as well that the carer is somehow happy to have a position of authority toward the cared for which make the carer develope a relashionship based on excercising power and not providing well balance care. Personnaly I do not need a position of carer I am into it because of circonstances but yes find it both rewarding and overwhelming this does not mean that I do not need my son or does not love him but simply that seing him becoming independant and coping would reassure me more.

 

The fact that the carer get all the emphaty may have been emphasise in Patrick and Mother story but is hardly a reflection of the truth and this is the reason why carer are denied any human consideration and treated like carerobot-provider the only time they get some recognition is when they are nearly collapsing and the SS realises that losing that carer would be much more expensive.

As for the decision making there are procedure of law which untitle the carer to decide for the cared for it is a judicial decision made only on certain ground like permanent mental illness with diminish responsability or severe retardation making the cared for unable to decide for himself, as far as I know those procedures can go ahead only with various report and DX from professional, and even so the cared for is never forced into things which are clearly upseting them too much.

 

One of my friend had her mother living in Paris and suffering from Alzheimer, as her mum become more ill and became unable to stay on her own ( losing everything in the house, getting the curtain in fire, going out at 4 o'clock at night to buy some bread and getting lost in an area she had been living in for more than 30 years ) my friend living in London had to realised that her Mum could not live on her own anymore she wanted to care for her and took her to London for a couple of months trying to convince her to stay but she was getting restless and wanted to go back to Paris my friend eventually arrange for her Mum to be taken in a nursing home close to where she had lived for so long. However after only a year being heavily medicated her Mother deteriorated so much that my friend finally convince her to move to her home in London ( for this pupose my friend move part of her mum furnitures into the bigest bedroom they had to give her mum some sens of security) where they could look after her in a more decent way, after another 10 months sadly the Mother died of an heart attack. At some stage along the line because of the distance my friend had given power to an attorney to look after her mother life organisation and financial affaire.

At no time her mother getting less and less able to decide by herself was ever forced to go anywhere without her consent and all what was decided for her, was done taking the time during her more aware periods to explain and ask her if would agree to it.

I fail to see how in this case the cared for has been treated as sub-human if it is respective to the describtion of events which prone my friend to decide she could no longer live on her own this procedure is indeed a safeguard to make sure that cared for people do not lose their independance just out of a carer whim.

 

As for the position of carer it is dependant to the fact that as a carer we have a persone to care for quite rightly but this should not be seen as the cared for employing us as such as most of the time the only contract is the one of trust and love between cared for and carer.Beside a work contract as such could be broken by either party which in fact does not happen in most of carer cared for relationship, because they are likely to be based on family tide.

 

Lucas you seems as well to resent the fact the cared for is considered to be a burden and the main source of the problems faced by the carer as such it is not the cared for but merely the fact that the cared for has a disability which is a source of additional difficulties for everybody concerned the cared for and the carer (it is the presence of the disability or illness which make te cared for in need of a carer) The fact that there are some kind of dependance of the cared for respective to his carer does not necessarely implied that the carer is abusing the cared for or unwilling to consider his wishes. The most difficult cases are of course when there is a degree of mental illness or mental disability/retardation which make it very difficult for the carer to draw the line betweem making decision because the cared for is not able to decide by himself and making those decision to controle a situation the carer found too overwhelming rightly or wrongly.

 

As for the story of Patrick and his mother I was just wondering how people would have reacted if the mother feeling unable to cope anymore would have decided to leave her son in the hand of the SS and go to live an easier life somewhere else was she legaly untitled to make that choice ? To me it seems that of course it was a more acceptable solution even if Patrick would have probably suffer a lot from i

it. However his mother had probably reach a point of depression where she became unable to realised and decide what to do.

You may argue that implying that the abandon of Patrick would have simplify the life of his mother is an Hitlerian fascist way of thinking but it is in many cases a reality yet again not taking into account the loving relationship which most of the time exist between carer and cared for.

 

As for my previous request I was just asking you to express how carer for AS young adult can help them without being patronising? I wish you could give me some concrete example to understand better where and why conflicts come about.

 

With the best of intention.

 

Malika.

[mossgrove]

Will you please work it out: You are not a carer without a disabled person to care for.

 

Meeting the needs of the disabled person benefits the carer automatically, but meeting the needs of the carer does NOT have the same effect on the disabled person. That is why disabled Autistics are in a $h!t bowl.

I do not accept that. It is not me not hearing you or not working it out, I simply don't agree with you. I think meeting the carers needs automatically makes the care better which makes life better for the disabled person. The only way this would not be true would be if the carer marginalised the diabled person to better meet their own needs, and I think it would be insulting to suggest that many carrers would do that.

 

I may not be a carer without someone to care for, but like other carers I am a person in my own right in addition to being a carer. That appears to be what you will not accept.

 

Simon

[Lucas]

Wake up! Many carers have already done that and will do that given the means to! Very rarely do disabled people kill their carers but carers killing their carees is all too common and piling on services for them will not change anything as Canada has shown; they simply keep demanding more services for themselves where they already exist and no amount of provision ever solves this and the disabled in Canada are marginalised as they will be here soon.

 

I have had no kind of appropriate feedback from you or Malika that tells me you understand anything, your insistence that you do doesn't tell me anything. Malika has decided once again to not take what I say but make up what I say.

[mossgrove]

I think the fact that I see it as providing necessary sevices and you see it as 'piling services' on people that you evidently feel should not recieve them speaks volumes about why we will never agree. We are back to the notion that carers should put up and shut up, which you say is not your view, but it is plain that is what you really think.

 

Carers killing their autistic children has happened, but the reason that it makes the news is precisely because it is so infrequent, not because it is common.

 

Carers are not your enemy. Carers are frequently the only person standing up for the rights of the diabled people they care for. Maginalising disabled people is unacceptable, but marginalising carers in the way you are doing isn't acceptable either.

 

Simon

[Malika]

Well Lucas If you read my post again I started by saying "if I understand well" I repeat quite few times "you seem to think" and "may be you think as well" this was to show you that I wasn't sure I got it right but instead of correcting me objectively about why I got it wrong and where you keep getting grumpy about the situation in Canada which has nothing to do with me.

 

As far as I can see you may find difficult to argue objectively may be because you are stuck into negative emotions which may have come about because of your own experience as a cared for if this is the case the only way for you would be to try to share it with somebody you trust but may be it is impossible for you to consider to trust anyone specially NT people.

 

You see Lucas when you want people to understand you, you should try to avoid generalising about situation which are different for everybody, it does not help to accuse the people who you wish would understand your situation and the situation of persones like you.

Beside you cannot expect people to read your mind and give you answer about things you have not expressed clearly and objectively.( I realised this is an NT perpective) If you cannot do that because of your very strong feelings about how the situation has been presented by the media, then try not to assume that we always get it wrong and to accept that you may play a part in the communication problem.

If then your feelings are so strong because you convince yourself that any emphaty toward Patrick mother means that carers deep inside would like to get rid of their cared for, hoping for cure or death and even killing them, there is not much I can do now to convince you, or may be you are just angry as what you consider a very lenient sentence showing a society wich does not really care about disable people, may be it would help to read our post about how we feel for our cared for from a different angle. But can you?

Could you at least accept that if we wish for our children to get better it is because we worry about them the fact that as a result of them getting better we would and they would be able to live a more independant life never means that we are resentful toward them. <'> <'>

 

Please do note that I keep expressing my view with" if "and conditionnal sentences which should show you once more that I do not assume that what I may perceived is an universal truth on the way you think.

 

I hope one day to be able to understand and clarify all this in the mean time Take care.

 

Malika.

[Kris]

I am watching how this thread is progressing!

 

As Simon says, lets agree to disagree.

 

Kris

[asereht]

As Simon says, lets agree to disagree.

I also suggested this but it didn't go down too well

 

Theresa

[mossgrove]

I think Lucas is disagreeing that I have right to disagree, but I may have got that wrong too.

 

 

Simon

[Lucas]

And I have already explained Kris why I cannot agree to disagree with harm to myself.

 

I'm continuing to recieve replies not at all indicating that I've been understood, but they frequently contain distortions of my expressed views.

 

Autistics being murdered by their carers are common, what is uncommon is the media attention and what is increasinly becoming more common is the carer not recieving any adequete sentence.

 

You are applying moral relativism in an area where you at least can afford to be morally ambigious. We will not agree because you will not listen to what I say, instead opting to invent a favourable(to you) version of what I say and then respond to that.

[asereht]

Lucas ,

 

I fully understand where you are coming from but as you don't think you are being understood by some maybe it's time to drop the subject before it becomes too big an issue.

 

I think this time it's a no win situation.

 

Theresa

[Lucas]

'Too big an issue'?

 

I'm very sorry that my panicking under an extreme threat to myself is hurting those expressing the very ideas threatening me. No really I am. I'll stop now so those doing this can feel good about doing it.

[asereht]

'Too big an issue'?

 

I'm very sorry that my panicking under an extreme threat to myself is hurting those expressing the very ideas threatening me. No really I am. I'll stop now so those doing this can feel good about doing it.

I'm sorry Lucas if that sounded bad.

 

I realise this is a very big issue for you but what I am trying to say is ,other people just don't seem to get it so all the talking in the world won't convince them and you end up with one massive headache.

 

 

If you feel you can go on and say more then do but be careful or you know what will happen , and then you do lose as you can't continue.

 

Theresa

[mossgrove]

Lucas

 

Patick was not killed because the Mothers needs as a carer were being met at the expence of Patrick, he was killed because the family was not having their needs met.

 

What Paticks mother did was unacceptable, tragic and wrong, but it was not caused by excessive attention being given to the carers needs. Had the families needs been met by the system Patrick would be alive today.

 

I have looked at the facts of the case and decided that it Patrick's mothers need had been met, Patrick would be alive today. You have looked at the facts of the case and come to a different conclusion.

 

That is why I cannot accept a line of reasoning that says that taking a carers needs into acccount as a distinct issue from the needs of the disabled person is likely to lead parents to murder their Autistic children. There is simply no evidence to support that view.

 

My belief is that more Autistic children will be killed if the needs of their carers are not properly considered. Therfore I have no moral obligation to agree with your line of reasoning because, IMHO I think you are wrong.

 

Patrick is dead because both of them were let down by the system, he is not dead because the focus of attention was inappropriately tilted towartds the carers needs. You may feel that Paticks mother is deserving of punishment, and that failing to punish her is an injustice but punishment of this lady will not bring Patrick back, and fear of punishment would not have stayed her hand because she fully intended to take her own life.

 

To say that, in reaching this conclusion, I am advocating the marginalisation of all disabled people is offensive and wrong. Please stop accusing me of malevolent intents that I do not posess.

 

Simon

Edited November 11, 2005 by mossgrove

[baddad]

A suggestion -

 

As it seems this difference of opinion has been going on for some time, and it seems to be causing distress for other people, could i suggest that it continue in PM's?

 

If you do come to any sort of conclusion you can both agree on, you could then post that conclusion in the thread at some later point...

 

In general, the thread seems to have become a bit of a two way conversation, with others posting variations on the theme of 'couldn't you agree to differ?' Lucas has made it clear that he feels he CAN'T agree to differ, because of the importance he places on the issue, and Mossgrove has made it clear that his equally valid and strongly held opinion is unlikely to change, so it seems pointless carrying this on publically.

 

I hope neither of you are offended by this suggestion, and i am in no way suggesting that you shouldn't be free to continue this debate in any way you see fit. What I am asking is that you do so elsewhere, so that others can continue the thread if they want to without feeling that they are walking on eggshells.

 

L&P

BD

[mossgrove]

Baddad

 

I hear what you are saying, but don't like the implication that Lucas is defending a sincerley held belief and I am just being stubborn. We are both defending sincerley held beliefs, not just being argumentative for the sake of it.

 

Simon

[baddad]

Sorry, Mossgrove -

I didn't intend that, of course, but can see on looking again that it could appear that way. I'll amend the original post accordingly, and would add that I'm making no judgement about either opinion, nor endorsing any particular perspective.

L&P

BD

[Lucas]

Mossgrove, you are deliberately missing my point by invoking the specific instance of the Marckrows which I was not refering to when I made my original point.

 

Canada and it's rank disability public policies are the evidence if you ever bother to care.

 

A carer has needs as a person, but their needs as a carer should NEVER be held as a stand-alone issue from the needs of disabled people.

[mossgrove]

to portray the needs of a carer as a stand-alone issue puts disabled people in a position where they are part of the problem, this same way of thinking cost Charles Antoine-Blias and Patrick Mackroy their lives.

 

Mossgrove, you are deliberately missing my point by invoking the specific instance of the Marckrows which I was not refering to when I made my original point.

 

I had been avoiding specific references as far as possible, but after your concerns that I was not answering your points I couldn't answer you fully without making a reference. You are right that a failure to consider Patrick as a person in his own right has distorted the response to Patricks death, and I am not defending that in any way. I do not believe that it was a contributory factor in his death however, as a proper consideration of EITHER Patricks needs or his mothers (or both) would have prevented the tragedy. I wil simply answering your point that viewing the carers needs as a standalone issue was an example of the kind of thinking that led to Patricks death, because I don't think it was the cause.

 

Simon

[Lucas]

And I still did not refer to the Marckrow's case when I made my original point(which was not the one you quoted).

 

But I disagree with your latest post. Social Services offered a respite to Mrs Marckrow which she deemed inadequete after Patrick became more difficult(I agree with her, but I do not agree with her solution which was to deny the service altogether). This service was not provided for Patrick's benefit, but for Mrs Marckrow so she could get some rest and I believe this fact was the contributing reason to Patrick's increased difficulties: the service was not in his interests but his carer's.

 

I work in a youth club which is the best in the Harrogate area and one of the best in Yorkshire and we have the papers to prove it. What sets this club out from the rest is the general attitude of the staff. OFSTED(because we are run by Granby Community Education) thought the find was notable: when asked "What is the youth club for?" staff at some of the worst performing clubs answered with(to the effect of) "It gets the kids off the streets and gives them something to do. They cause less trouble and can let of steam in a supervised place." So the whole point of their clubs was to meet the needs not of young people, but everyone else who had to put up with these anti-social sprogs, it keeps them away from the people they cause so much misery to.

 

But the answer of every single one of our staff(including me; I'm learning from the best) and some staff at better clubs was(to the effect of) "Social education. The places young people are made to spend most time in are detrimental to their social development. Schools may have strict anti-bullying policies but that doesn't stop teasing among 'friends' which are not ever accepted as a problem and peer-pressure. The naunces of youth socialising is missed by staff because staff do not effectively socialise with children but youth workers do. Teachers are actualy incredibly bad examples of social skills because of their professional detachment." So at the best clubs, the purpose is not to serve the needs of the wider community who are sick of their own children, but the kids themselves.

 

Youth clubs are for young people, so we serve the needs of young peope, no one else. Youth clubs are not there to keep young people away from society until they become decent human beings(as if they ever will with the way they are often regarded), the same applies to carers and carees. Services concerning disabled people and their care should purely be in the benefit of disabled people, not the carer. The carer will benefit from the needs of their caree being met, but the opposite just isn't true as history repeatedly shows.

[bid]

Simon, you say that by meeting the needs of the carer, the needs of the caree are automatically met too.

 

With every respect, I think you might be assuming that all carers are like yourself and the other carers you might know...struggling to ensure that the person they care for receives the best and most apprpriate support .

 

BUT...sadly there are plenty of carers who are not like this. I have seen this professionally

 

That is why it must be the needs of the caree that are central and met first. Why else do we have the new concept of 'Person Centred Planning'?? (I think that's the right phrase...it's late, and I've just tottered in from work )

 

Putting the needs of the disabled person first ensures their safety and reaffirms their inherant value as an autonomous member of our society.

 

This approach in no way says that carers don't need support, respite, etc, but I have seen at first hand that some carers are happy to ensure their own needs are met to the detriment of their children

 

Bid

[asereht]

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.

Bid I agree with you which is why I said this earlier.

 

Theresa

[bid]

Sadly I have professional experience of worse things than just moaning

 

I think this is why I have found this thread so personally upsetting: professionally I have seen what can happen when the needs of the disabled person are most certainly not put first.

 

Bid

[Zemanski]

I'll back you on that, Bid - you really do not want to know some of the things I've seen

 

and wasn't that case of foster parents of children with disabilities who kept the kids in cages in the paper just a few months ago

 

most carers are good people who care

 

a few, unfortunately, are not

 

 

Zemanski

[Malika]

Hi all

 

I agree with you on this that some carer need to be monitored what I found in deprive area in Paris 25 years ago is that some primary carer are not able to meet the caree needs because they are themself in need of help, I am talking here of cases of drug addiction, prostitution, alcoholism (a lot of it) and quite few cases of severe mental illness, before working in an educational centre in Paris i worked in an emergency centre where I received my training and there we had children who had all sort of difficulties, it is true that it was the most vulnerable one because of learning disabilities or developmental problems who had been treated the worse but most of the family at risk had the same problems I mentioned earlier, some carer who felt that things were getting out of hand would ask for help and children sometimes would stay in residential for 2 years to allow the carers to sorts themself out and then be allowed to be reunited with their children with some monitoring in place.( in most cases regular contact were incourage as far as the children welfare was considered first)

Another thing I have just found out is that in France with any DX of disability especially autism the parents have to go through a psychological assesment and are given advice according their own situation they are as well monitored by social services either at their request or because the SS feel that they may not be able to cope very well. This is good however the system there is much more intrusive and generate other sort of problems especialy a lack of trust within the ethnic minorities, who live in the most deprived area, as a consequences many vulnerable people are slipping out of the net with disastrous consequences.

 

Malika.

[call me jaded]

Simon said:

 

I think meeting the carers needs automatically makes the care better which makes life better for the disabled person.

 

To me this is not the same as:

 

that by meeting the needs of the carer, the needs of the caree are automatically met too.

 

Meeting the needs of the carer is part, but not the whole of meeting the needs of cared for. Just as meeting the needs of the cared for is part, but not the whole of meeting the needs of the carer.

 

Two separate human beings who each have their own rights. Just because there are poor carers this does not mean that those rights should be denied to all.

[Malika]

Hi Jaded

 

Well said and spot on.

 

Malika.

[Lucas]

And a distortion of the points which have been put before.

 

The carer has needs as a person which need to be met, but they should NEVER be thought of as having needs as a carer except when prefixed with the interests of the caree.

 

It is never long after that, that the rights of the disabled are diminished to meet the needs of carers as is what has happened in Canada and throughout history.

[call me jaded]

Do you not think that a caree has more needs than just being cared for?

[Lucas]

Which is a question I don't even understand as I never said anything to the effects of a caree's needs as a caree are exclusive.

[call me jaded]

But you have implied that a carers needs are exclusive. Do you see what I'm getting at?

[Lucas]

No, because I've done nothing of the sort and everytime you have said that I have I've said the same damn thing in reply.

[call me jaded]

So this

 

but they should NEVER be thought of as having needs as a carer except when prefixed with the interests of the caree

 

is not exclusive?

 

Ah well.

[call me jaded]

At last I've thought of an example of carer's needs.

 

I'm just off to blob out in front of the mindlessness that is the X Factor. Believe me, before I became a carer I would not have had this need. Thus my need arises out of being a carer.

 

But of course Lucas will say my son needs me to watch the X Factor. I say baloney.

 

Have a good evening everyone.

[Flora]

Me too jaded, then I'm going to hit the bottle.

 

<'> Lauren <'>