The Crippen Diaries - 2008 : December (1)
What do you want to do when you grow up...December 2008 (1)
As Jenny walked into the consulting room it was clear that she was distraught. She was in tears before she started talking. She is about seventeen weeks into her second pregnancy. She already has a two-year old daughter. Jenny is forty-two. She married late in life, at thirty-eight. Until then, although she was a full-time primary school teacher, she was also an as near as dammit full-time carer for her elderly mother. Then mother died unexpectedly and, within a year, rather to her surprise, Jenny was married to a fellow teacher, who is now fifty. Yesterday, she had the result of the amniocentesis. She is carrying a Down’s Syndrome baby.
Jenny is going to have an abortion. You can call it a “termination” or a TOP if that makes you feel more comfortable. Jenny does not feel comfortable. She feels dreadful. She feels guilty. She has been thinking of little else since the blood test and the nuchal thickness scan first raised the possibility of Down’s syndrome. She feels particularly bad about it because she too has read and listened to the recent ill-informed media barrage which alleges that more and more parents of Down’s babies are deciding not to have abortions:
Let’s just look at some hard, home truths. Watching wheelchair tennis is at best boring, at worst cringe-making and in both cases makes most of us feel profoundly uncomfortable. And however much you want to pretend otherwise, people with Down’s Syndrome can never live entirely normal lives, and very few of them (I have never met one) will achieve complete and total independence as adults. The Down’s Syndrome Association (DSA) would have you believe otherwise.
Jenny knows a thing or two about children. She is a teacher. And, for much of her adult life, she has been a carer. She does not want to be a carer again for the rest of her life. Her biggest fear (a fear that those who have not been faced with this agonising choice tend to overlook) is that she does not want her two year old daughter to be brought up in an environment in which a possibly severely disabled younger sibling monopolises the family. Jenny and her husband are teachers . They are not rich. Bringing up a disabled child would likely take all their resources, mental, physical and financial, for the rest of their lives. And then, when they die, their daughter would have to take over.
Like ninety per cent of other Down’s syndrome parents, Jenny is going to have an abortion. You can argue that it is a selfish decision. Maybe so. Jenny certainly thinks it is. But I don’t think we should make her feel bad about it.
++++++++++++
I do not often recommend NHS websites. Most of them are a complete waste of time (see here if you don’t believe me) but Behind the Headlines is always worth a look when the main stream media goes overboard on some implausible medical story.
As Jenny walked into the consulting room it was clear that she was distraught. She was in tears before she started talking. She is about seventeen weeks into her second pregnancy. She already has a two-year old daughter. Jenny is forty-two. She married late in life, at thirty-eight. Until then, although she was a full-time primary school teacher, she was also an as near as dammit full-time carer for her elderly mother. Then mother died unexpectedly and, within a year, rather to her surprise, Jenny was married to a fellow teacher, who is now fifty. Yesterday, she had the result of the amniocentesis. She is carrying a Down’s Syndrome baby.
Jenny is going to have an abortion. You can call it a “termination” or a TOP if that makes you feel more comfortable. Jenny does not feel comfortable. She feels dreadful. She feels guilty. She has been thinking of little else since the blood test and the nuchal thickness scan first raised the possibility of Down’s syndrome. She feels particularly bad about it because she too has read and listened to the recent ill-informed media barrage which alleges that more and more parents of Down’s babies are deciding not to have abortions:
…many parents felt that life and society had improved for people affected by Down's. Some said their decision was influenced by the fact that they knew people with Down's.Ben Goldacre took a look this media outburst a few days ago.
Carol Boys, the [Down’s syndrome] association's chief executive, said: 'We are all very surprised by this. It seems to show that parents are thinking more carefully before opting for termination. When I and others had our babies it was a very different world - those with Down's syndrome were treated very differently. Now there is much greater inclusion and acceptance, with mainstream education having a huge role. We think this plays a part in the decisions parents make - there's even been a baby with Down's syndrome on EastEnders.'
Daily Mail
More than 9 out of ten women who have an antenatal diagnosis of Down’s syndrome decide to have a termination of the pregnancy. This proportion has not changed since 1989. This is the “decisions” that Felicity Finch, Radio 4, the Mail, the Times, the Mirror, and the rest are claiming more parents are taking: to carry on with a Down syndrome pregnancy. This is what they are taking as evidence of a more caring society. But the figure has not changed.I challenge you to think of anything more cras than the Daily Mail reporting someone suggesting that Eastenders is some sort of moral yardstick for the country.
Crass and insensitive moral reasoning helps nobody.
Ben Goldacre – Bad Science
“There’s even been a baby with Down’s syndrome on Eastenders”.Dear God. So what? Carol Boys of the Down’s Syndrome Association should be ashamed of herself.
“parents are thinking more carefully before opting for termination”Carol implies that if only parents thought “more carefully” fewer of them would opt for terminations. The Down’s Syndrome Association live in the same cosy world of politically correct half-truths as the para-olympics. Oh! Dear me, how dare you suggest that watching people play tennis in wheelchairs is not just as exciting as watching Wimbledon? How dare you suggest that Down’s Syndrome sufferers cannot lead a completely normal life?
Carol Boys – Down’s syndrome association
Let’s just look at some hard, home truths. Watching wheelchair tennis is at best boring, at worst cringe-making and in both cases makes most of us feel profoundly uncomfortable. And however much you want to pretend otherwise, people with Down’s Syndrome can never live entirely normal lives, and very few of them (I have never met one) will achieve complete and total independence as adults. The Down’s Syndrome Association (DSA) would have you believe otherwise.
Of a potential workforce of approx 15,000 adults with Down's syndrome in the UK, less than one in five will ever have the chance to prove that they are capable of contributing successfully to the nations economy. With appropriate training and support, people with Down's syndrome can and do make a huge contribution to their workplace. The Down's Syndrome Association wants to give people with Down's syndrome the same choices and chances as the rest of the population. We would like you to help us make this a reality.I’m sorry, guys, it is not "a reality". Down's syndrome sufferers can never have “the same choices and chances as the rest of the population” any more than the Para-olympic gold medal tennis winner can win Wimbledon. The DSA has done some wonderful and much needed work to reduce prejudice and increase opportunities but this subliminal message that Down’s syndrome sufferers are not in someway disabled is misleading.
Down's Syndrome Association
Jenny knows a thing or two about children. She is a teacher. And, for much of her adult life, she has been a carer. She does not want to be a carer again for the rest of her life. Her biggest fear (a fear that those who have not been faced with this agonising choice tend to overlook) is that she does not want her two year old daughter to be brought up in an environment in which a possibly severely disabled younger sibling monopolises the family. Jenny and her husband are teachers . They are not rich. Bringing up a disabled child would likely take all their resources, mental, physical and financial, for the rest of their lives. And then, when they die, their daughter would have to take over.
Like ninety per cent of other Down’s syndrome parents, Jenny is going to have an abortion. You can argue that it is a selfish decision. Maybe so. Jenny certainly thinks it is. But I don’t think we should make her feel bad about it.
++++++++++++
I do not often recommend NHS websites. Most of them are a complete waste of time (see here if you don’t believe me) but Behind the Headlines is always worth a look when the main stream media goes overboard on some implausible medical story.
Labels: Abortions, Down's Syndrome, Media misrepresentation
73 Comments:
A while ago there was a documentary about Prader Willi syndrome on Channel 4. One of those featured was a young woman - it appeared to me that she and her parents had been fed the line that she would be able to live independently, and this was her dream - but it couldn't happen. The docu showed her going to some kind of residential home for people with Prader Willi - she would not accept that she could not live independently - I got the impression that this was the positive thinking dream she (and her parents) had been fed all her life.
K
I would repeat the comment I made on Dr Crippen's blog a few days ago that the lady in this story, Jenny, will likely be offered more help from the NHS with her decision to terminate than with actually bringing up a baby with Down's.
So saying, I am a unpaid parent carer of a 14 year old son with a rare genetic disorder that affects boys only, OCRL or Lowe syndrome (LS). LS leaves my son with multiple and profound physical, learning and sensory disabilities requiring 24/7 care, including epilepsy, double incontinence, registered blind, fanconi syndrome and being non verbal. He is a part time wheelchair user and he also has some mild self injurious behaviour.
We already had a healthy girl when our son was born and wanted a chance at a "healthy" boy, or at least a "neurotypical" sibling for our daughter. We were very fortunate that scientists dedicated to research into Lowe's had developed a reliable antenatal test for LS in an affected foetus. We decided in principle to terminate another boy with LS...however the point was moot as our third child is also a girl.
No-one could tell us how badly affected another child with LS could be and for every fibre I love my son I could not knowingly afflict this condition on another human being, no less my own child.
It is the hardest thing in the world to be a parent carer in the UK, it's thankless, statusless, never-ending, underpaid, not resourced in terms of support, physically or emotionally.It is filled with of the most incredibly ignorant and patronising things you have ever heard about caring and disability, quite often, from family and friends. You have to fight absolutely every bugger in every service from getting syringes to wheelchairs and incontinence supplies, from blue badges to DLA forms to educational statementing to respite care.
Unpaid carers have no rights in law to limit the hours they work, no rights to a minimum wage ( even though it is the only UK benefit that you have to work at least 35 hours for ), they have no rights in law to emergency or sickness cover, a day off, or health and safety training such as moving and handling, and no chance of any occupational pension, even though many people dedicate decades of their usual span of working life to caring for their loved one.
Lowe syndrome, rare, life limiting and life threatening is the *easy* part of looking after my son.
( and as a wee aside, my son is one of only 3 boys with LS in Scotland so it is pretty rare to meet anyone who knows about the condition or has met another boy with LS. One day I was treated to a 20 minute or so lecture by a healthcare professional, dare I say a nursey??? "all about Lowe syndrome" only for the person to realise she meant Down's - well, one syndrome is much the same as the next eh?
I take my hat off to Jenny and wish her the very best in the future.
I note your somewhat disparaging comments about the paralympics, and while I agree with much of what you said, I think it is important for the less abled (can't say physically handicapped) to have some goals to aim for, and the paralympics provides one of them.
Elaine, I find the real olympics bad enough...but, I'm sorry, but the para-olympics are cringe-making and intolerable. I know this is not very pc, but I think the para-olympics are patronising. I don't want to watch the disabled trying to do these things. As far as I am concerned, they do not need to prove themselves in this humiliating fashion.
John
I would repeat the comment I made on Dr Crippen's blog a few days ago that the lady in this story, Jenny, will likely be offered more help from the NHS with her decision to terminate than with actually bringing up a baby with Down's.
+++++
No doubt about that if only for obvious economic reasons.
But the DSA needs to concentrate on saying that Down's sufferers DO need help and support, and making sure that the NHS and society in general provides it
John
Ireland has a higher proportion of Down's Syndrome than most other European countries; this is explained by the fact that we alone with the Vatican do not allow abortion in Western Europe.
One consequence of this that I have personally experienced is that with better healthcare people with Down's are living well into middle age. I have met many people with Down's in their thirties and forties and invariably their elderly parents who have cared for them all their lives are desperately anxious about who will provide care for them when they become incapacitated due to old age or death.
I think choosing to abort a foetus with a genetic abnormality is a terrible decision for any woman to have to make but I agree with Dr. Crippen that these women need support and not crass blinkered propaganda.
Be thankful you live in a country where you still have the right to make that choice.
I only hope the poor woman will receive the support and kindness she deserves. She has not chosen 'an easy way' and has lost the child she had hoped for. How dare anyone else judge her choices.
Dr John Crippen said...
Elaine, I find the real olympics bad enough...but, I'm sorry, but the para-olympics are cringe-making and intolerable. I know this is not very pc, but I think the para-olympics are patronising. I don't want to watch the disabled trying to do these things. As far as I am concerned, they do not need to prove themselves in this humiliating fashion.
...........................
It's attitudes like that that create stigma for people with disabilities.
If your daughter fell off her horse and became a paraplegic, would you expect her to sit and twiddle her thumbs while staring at four walls every day?
If instead of doing nothing, she took up wheelchair netball, rose to the top of her game and competed for her country, would you not be overjoyed that she was leading a full life instead of the desolate/despairing one you imagine disabled people lead?
What's humiliating or patronising about people enjoying themselves playing sport for their country? Is it cos they don't run/throw/kick like you do?
WRT Jenny, I think she should be offered support and understanding when deciding on a termination.
However I do wonder what society considers so different about people with Downs? Plenty of young people whether through disease, lifestyle or accidents end up needing full-time care and support for the rest of their adult lives. Why are their lives worth more than those of someone with Downs and where does the selectivity end?
Hi anonymous (another) at 9.06. You said:
It's attitudes like that that create stigma for people with disabilities. If your daughter fell off her horse and became a paraplegic, would you expect her to sit and twiddle her thumbs while staring at four walls every day?
If instead of doing nothing, she took up wheelchair netball, rose to the top of her game and competed for her country, would you not be overjoyed that she was leading a full life instead of the desolate/despairing one you imagine disabled people lead?
What's humiliating or patronising about people enjoying themselves playing sport for their country? Is it cos they don't run/throw/kick like you do?
+++++++
Yes, I knew this onslaught was going to come. First, I do in fact have personal family experience of disability, and wrote about it briefly once, here:
http://nhsblogdoc.blogspot.com/2008/05/aunty-jenny-and-tinker-bell.html
Secondly, I know this is a difficult area and I agree wholeheartedly with the sentiments behind what you say. But it is important to separate sentiment from reality.
would you not be overjoyed that she was leading a full life instead of the desolate/despairing one you imagine disabled people lead?
A large number of disabled (particularly the mentally disabled) live lives as you describe. I have to try to pick up the pieces on behalf of the patients I have in this situation. Please do not start to lecture me about the parlous state of the chronically mentally disabled, the patients with learning difficulties, the schizophrenics, the MS sufferers, the arthritics crippled with pain.... I could go on and on. The list is long.
I am sick and tired of the canting hypocrisy of the media and the large majority of our pseudo caring population who "rejoice" at the site of a paraplegic playing a sort of tennis in the "special" olympics. This is their "get out of jail free" card for their conscience. "Oh Look" they purr "that disabled girl has won a gold medal for swimming. Aren't we a kind and caring society."
The majority of disabled people are trying to find the money to pay their heating bill to keep the one room in which they live warm.
I hate the nauseating hypocrisy of the para-olympics. If people want to play wheelchair tennis, that's fine by me, but please don't ask me to pay for it. Let's take all the money that the UK is going to throw at the para-olympics in 2012 and spend it on providing decent community care for MS patients; or for elderly patients with arthritis; or for schizophrenics.
The para-olympics make me puke
John
Dr Crippen:
Let's take all the money that the UK is going to throw at the para-olympics in 2012 and spend it on providing decent community care for MS patients; or for elderly patients with arthritis; or for schizophrenics.
The paraOlympics, you say?
"I hate the nauseating hypocrisy of the para-olympics. If people want to play wheelchair tennis, that's fine by me, but please don't ask me to pay for it. Let's take all the money that the UK is going to throw at the para-olympics in 2012 and spend it on providing decent community care for MS patients; or for elderly patients with arthritis; or for schizophrenics.
The para-olympics make me puke"
The Olympic games make me puke too, more so than the Paralympics! A tremendous waste of taxpayers'money in my opinion. If it were funded by business sponsorship, in the same way as football, I would not have a problem.
Back to Jenny for a moment. I hope she gets the support she no doubt needs.
I have an aunt with Down's. My mother's twin sister, no less. She's going to be 57 years old shortly, and is remarkably high-functioning: she can read, write, do sign language, take care of her own ADLs. She has been remarkably fortunate, health-wise, as well, with the same handful of medications most folks her age and a little older eventually get.
I love her to pieces.
But my grandfather, who was her caregiver, died a few years ago at the age of 86. My mother volunteered to take on her care, but found it too much of a burden. I will take her on myself once I get my practice set up and heating put in my house, a year or two from now, but as things stand, my sister and her husband are caring for her. They have four children besides. It's not easy on my sister.
And recall that my aunt is one of the people who the Down's Society likes to talk about: great function, great potential. Imagine if she was severely affected.
Love doesn't conquer all.
PS: I imagine if you knew they were advertising naturopathic medicine and holistic nursing college on your google ads, you'd blow your top.
word verification: forkin
Dr Crippen wrote, "any more than the Para-olympic gold medal tennis winner can win Wimbledon."
Not many nondisabled people win Wimbledon either.
Michael Phelps has ADHD and has won more Olympic medals than anyone.
The famous playright Arthur Miller abandoned his Down syndrome son soon after birth. Arthur Miller's son Daniel grew up to be an activist in People First, working to make the world better for everyone, not just for normal or presumed-to-be-superior people.
I'd rather be Daniel Miller than Arthur Miller (or than Dr Crippen, who would write off my disabled life as pathetic and inferior--perhaps I should be locked up somewhere so as not to offend anyone?) any day.
The Down syndrome organization I know (also see the work of the physician Brian Skotko), and People First groups, work to provide accurate information for those who are interested.
For those who aren't, for those like Dr Crippen who deny the worth in disabled lives and indeed seem to be ashamed that we're not decently hidden away, there seems to be little hope. One can only feel sorry for them.
Diabled lives are very often very difficult and precarious. Daily we encounter, and have decisions made about us by, people who see us as in the way, as destructive to ourselves and others, as drains on families and society, as pathetic and pitiful and hideous and inferior, as incapable of understanding or making decisions about our own lives, as having lives not worth living, as having nothing to contribute, etc.
I think people like Michelle are being deliberately obtuse and misconstruing the arguments being set out.
Its plain to anyone that looks objectively that Dr C is saying why throw money at paraolympics games when those self same disabled people are not even given the support financially to live above the beadline (now know as the fuel line by some).
Instead, Michelle and others would rather paint it as an attack on the worth of disabled people.
It is not.
I have a further attack on the special games. Has anyone actually watched it? In what way is a 100m sprint by 10 men, whose 'disabilities' are either mental/learning, or loss of a hand/forearm in anyway inspirational.
I'm sorry, but Lance Armstrong these guys ain't.
We have an autistic son. He was born 'normal' but soon it became clear that all was not right. We worry too about his quality of life when we die. He gets disability living allowance which we put into a bank account for him along with some extra money. It's a struggle financially to do this but we are glad we live in a society that is willing to give benefits to people with disabilities.
He has with coordinated help with his LSA's, teachers, classmates and of course his family, carved reasonable social skills which I hope is his for life. When he reaches adulthood he will not receive such support. I think we need to be more supportive of adults with disabilities. After all many people gain thier disability through disease and accidents. We all of us can't be constrained by the expected 'norms' of society. It doesn't take much to be more tolerant.
Jenny has a choice, albeit a difficult one, I wish her well and of course no one but anti choicers would condemn her for her decision whatever that might be. What I don't like is when someone is condemned for deciding to keep a child with a disability.
BTW, I enjoyed the paralympics this year, especially the swimming. I gave it as much attention as I did the olympics.
Dr C, I think you have to ask yourself what the Paralympics is for.
Perhaps it isn’t about people proving anything to others – my daughter certainly has nothing to prove to her mother or me – but about people proving something to themselves.
If it shows just one disabled person that their disability can be overcome in some way, then surely it is a worthwhile event?
Oh! Dear. Of course when one starts voicing opinions that are not politically correct, even though they are widely if covertly shared, one must expect some flak.
Michelle says:
Michael Phelps has ADHD and has won more Olympic medals than anyone.
That begs a lot of questions and in any case supports my arugments. Phelps did not compete in the paraolympics he competed in the real ones. Is ADHD a disability? Sometimes. But sometimes it can be an advantage. Many ADHD sufferers are very high achievers. And even bigger question is, “does ADHD exist, or is it merely the end of a spectrum of normality that has been turned into a “medical condition” by Big Pharma so that it can flog its drugs? I can tell you one thing though. Phelps was not taking Ritalin or Concerta during the games.
The famous playright Arthur Miller abandoned his Down syndrome son soon after birth.
Well, clearly the man is a shit. I am not suggesting that Down’s syndrome babies should be abandoned.
Arthur Miller's son Daniel grew up to be an activist in People First, working to make the world better for everyone, not just for normal or presumed-to-be-superior people.
And your point is?
In fact you are indulging in DSA type con. Daniel Miller was treated appallingly badly by his father and is now figurehead and contributer to People First. But he is not capable of living independently.
[Today, Daniel Miller lives with the elderly couple who have long taken care of him, in a sprawling addition to their home that was built especially for him. He continues to receive daily visits from a state social worker, whom he's known for years. Although his father left him enough money to provide for everything he needs, Daniel has kept his job, which he loves and "is very proud of," according to Rebecca, who visits him with her family on holidays and during the summers. "Danny is very much part of our family," she said, and "leads a very active, happy life, surrounded by people who love him."
See here : http://nagarjuna1953.blogspot.com/2007/08/arthur-and-daniel-miller.html]
I'd rather be Daniel Miller than Arthur Miller
Somewhat hypothetical I think. I can be hypothetical too. I would rather be Arthur Miller, but a kinder version Arthur Miller, who looked after his son.
(or than Dr Crippen, who would write off my disabled life as pathetic and inferior--perhaps I should be locked up somewhere so as not to offend anyone?) any day.
Now you are getting emotional, silly and abusive. Nowhere have I said or implied that disabled people should be written off. Or locked up. Nowhere have I said that disabled people, per se, are offensive. But I still have not time for the Para-olympics which are a hypocritical irrelevant flummery, upon which billions of pounds are wasted so that able bodied/minded people can look on with their complacent patronising smiles and indulge in their shallow “feel good” sentimentality. Meanwhile, the real disabled people, the ones with serious disability, the ones for whom the act of getting dressed or going to the lavatory without assistance is a daily major acheivemet, are left to rot in their garrets with bugger all support from the NHS or form Society in general. These are the people I see.
For example, I have a patient with progressive MS who is housebound, but can transfer from wheelchair to ordinary chair, and to a chair in her shower room. Except the door to the shower room is too narrow to get the wheelchair in. And, yes, it is going to be done, the forms have been filled in, the protocol bound tick-sheet ticking tits have “authorised it” and still, after five months she waits. And I phone and shout, and write and shout, and plead, and beg, and explain her need for independence, and I am fobbed off with “well, a carer goes in once week to help her” and I explain that she wants to do it herself, and she wants to have a shower every day and it only costs a few hundred pounds to widen the door and so we go on and on and on and meanwhile can watch Boris build some wheelchair tennis velodrome in London at a cost of six squillion pounds…
Get real Michelle. Let’s send the money where it is needed.
John
I've heard a lot of disabled people (participants and others) talk about the paralympics. I don't expect all disabled people to agree with each other any more than all nondisabled people do, and I think the various views of disabled people deserve respect, rather than ridicule and disgust.
As I wrote in my first message, disabled lives are often incredibly difficult. I can say that from experience.
I disagree with Dr Crippen that the problem, when disabled people are devalued and therefore treated badly, is disabled people. I disagree with him that the solution is to claim that our lives are not worth living (because they cannot be normal), and that it would in fact be better for everyone if we did not exist at all.
I also disagree with Dr Crippen's view that if a disabled person lives with other people (as most people live with other people), then somehow that is proof that they have not made the cut (the only worthwhile life: a normal life).
I also generally disagree that the vast majority of nondisabled people are independent in the sense of never requiring assistance (from governments or those around them, including people they might live with), services, etc. The difference is that nondisabled people can take for granted, as of right, the kinds of services and assistance that are routinely considered onerous, and therefore denied, when disabled people require them.
You can judge a society by the way it treats its vulnerable people.
You have been judged and found wanting.
How fucking dare you declare that you have any right to value judge someone else's life and then measure it by your own mediocre standards.
I don't deny the right of parents to choose for themselves either. And I offer support for their decision - either way.
But how fucking dare you seek to cast opinion so ignorant. Of course it's hard to live a life disabled - that's why it's called a fucking disability you cretin.
You judge the value of everyone's life by your standard of existence and the values you attach to your life. You even tell everyone where the money should go. What exactly do you think you empirically 'know' about being disabled?
You ignominious megalomaniacal bastard child of Hitler.
Why should my world be tainted by bigoted obnoxious arrogant aloof wankers like you and why should I listen to your ever-so medically auspicious but socially inept bullshit?
The society in which we live determines how it caters for it's population based on the value it gives those people in their society. What you are attempting to do is subjugate generations of change to a society of 'acceptance' and 'tolerance' that increases the value and worth of every person in our society - just because you can't see the point of it if it isn't happening fast enough in your life time.
Well, matey - when you're dead - the world will go on.
Society is not all about you and your myopic selfish opinion.
Yesterday there were more like you.
Tomorrow there will be less again.
You're a dying breed - and please be considerate to those still living and die quietly.
Tell me, Mr Ian and Ms Dawson– just to satisfy my curiosity– are all handicapped people as paranoid and hysterical as you two?
Because if so, the more screening, the better. Bring it on!
You wrote "Like ninety per cent of other Down’s syndrome parents, Jenny is going to have an abortion. You can argue that it is a selfish decision. Maybe so. Jenny certainly thinks it is. But I don’t think we should make her feel bad about it."
The impact of prenatal screening and selective abortion is an important issue. These discussions are necessary, even though they may make people like Jenny feel bad.
"...for much of her adult life, she has been a carer. She does not want to be a carer again for the rest of her life."
In choosing to become pregnant, Jenny is opting to care for a child for the next 18 years or so. Jenny, like all pregnant women, cannot know what the future holds for that potential person. A diagnosis of a developmental disability gives some indication of some of the difficulties s/he may face, but there is no human alive who is without problems in life.
How can Jenny know, even with a diagnosis, if "her two year old daughter [will] be brought up in an environment in which a possibly severely disabled younger sibling monopolises the family."?
My child has is autistic, and his siblings are doing all right.
"Bringing up a disabled child would likely take all their resources, mental, physical and financial, for the rest of their lives. And then, when they die, their daughter would have to take over." Perhaps it would, but it's just as likely that it wouldn't. Honestly, there are loads of families with a disabled child, where the parents get on with life, albeit a different version of what they might have foreseen, but where it isn't all doom and gloom and where despite everything, they work and cook and play and argue just like everyone else. The disability doesn't have to take over. It's not beyond the wit and wisdom of our society to come up with a solution to the issue of adults with developmental disabilities which combines as much independence as possible with the right level of support.
I think there is a big difference between a woman who is unable to have any child at a particular time, and one who rejects a certain previously wanted child, based on a diagnosis.
Disabled lives are as valuable as non-disabled lives. Disabled people face difficulties, some of them caused by the type of bureaucracy described by Dr Crippen in his tale of the lady waiting for a simple shower adjustment. Many of the problems I and others face, as parents of a disabled child, come from the attitudes of people we encounter, and from inflexible, ineffective support systems. However my son benefits from DLA (and what an effort it was to get that) and excellent health care. He's home-educated now, but went to an wonderful nursery and loved his first year at a special school. We have no input from social services.
Do you think money is wasted on big sporting events for everyone, or only on those for disabled people? Should only the Paralympics and/or Special Olympics budget be given over to making reasonable adaptations to the homes of disabled people, or should the main Olympics be affected too. What about the arts budget? Where should the money come from to make these people's lives that bit easier? People are born disabled or acquire disability, just as people are born with illnesses or become ill. I am proud to live in a society that has an NHS to care for the medical needs of us all, even with all the problems inherent in that system.
I know this comment is a bit disjointed but there have been so many issues raised in the post and comments.
You said "Of course when one starts voicing opinions that are not politically correct, even though they are widely if covertly shared, one must expect some flak."
Please, people can disagree with you for better reasons than upholding with some sort of politically correct orthodoxy.
As has been pointed out, some are born disabled, while others acquire disability later in life.
I am one of those who has acquired disability later in life, through chronic illness. During my childhood I fully expected to live a normal able bodied life. It is possible there is a genetic element to this illness. Therefore I think it would probably be better if I did not bring a child into the world - a) I could not care for it, as I cannot even care/earn for myself, and b) it might well also suffer this illness inherited from me, and I think it would be better not to knowingly, deliberately, bring into the world someone who would suffer this way. Voluntary eugenics, I suppose.
"...why should I listen to your ever-so medically auspicious but socially inept bullshit?"
I'm presuming you voluntarily turned on your PC, fired up your browser of choice, and either clicked on a bookmark, or hand-typed the address of Crippen's blog into your address bar and hit 'Go'? Correct?
If so, then can I suggest you don't, in future?
Apologies (of course) if you are being held at gunpoint or otherwise forced to read this blog....
"Elaine, I find the real olympics bad enough...but, I'm sorry, but the para-olympics are cringe-making and intolerable. I know this is not very pc, but I think the para-olympics are patronising. I don't want to watch the disabled trying to do these things. As far as I am concerned, they do not need to prove themselves in this humiliating fashion."
Surely, Doc, you're aware of the difference between the Paralympics (for physically disabled people) and the Special Olympics (for those with mental disabilities)?
And I think you're over-egging the omelette with regard to humiliation. I was genuinely interested in the Paralympics in Beijing a couple of months ago, as I was for the Olympics - although the patronising attitudes of a few of the commentators and others in the media did get on my nerves.
Michelle - I'm disabled (acquired neuro diability, not congenital) and like Crippen I've come to abhor the Paralympics and the 'being disabled is GREAT' brigade. Why? Well I happen to look 'normal'. Doesn't change the fact that I'm in constant pain, and find certain tasks impossible, but with the right meds I can just about refrain from suicidal ideation. But that's not good enough for the 'Sunshine Brigade' who see fit to say "See, he was born with NO LEGS and you don't see him sleeping for 14 hours at a time, he's an ATHLETE!"
Ugh. I don't doubt that with the right support (ie -money) PWD can have a great life, but I suspect the vast majority are like myself, desperately poor and virtually invisible.
Like the anon above I won't be breeding either. I couldn't look after a kid, and I certainly don't want to risk bringing someone into the world who has any chance of developing what I have. Wouldn't wish it on Gordon Brown tbh.
Oh and Crippen - that 'Birth Snark' bitch has gone the way of the dodo after the massive explosion of drama the other day. Trying to get a link so I can check if there's a google cache. Her cronies hng out at http://community.livejournal.com/birthsnark I believe. Sadly it's a locked community but looking around community based sites such as livejournal it's not too hard to find open examples.
Come on now Mr Ian; say what you really mean.
Dear Julia -
Force is a compulsion - and I am compelled to fight the evil bastards of this world.
And Crippen.
From my keyboard.
You want some?
Crippen writes as a voice of one side of an argument - but his voice, as evident, is not a lone one.
My comments on his auspicious blahdy blah blah... are relevant not to Mr Crippen - but to "doctor kill or cure" who he represents. I speak to his whole brethren of 'righteous deities' who espouse the answers to all humanity that are often only based on a whimsical and tangential passing acquaintance with the bigger picture and, in this case, seems to involve a modicum of eugenics.
There is no tolerance, no acceptance, no virtue or value to human existence - unless it is of an optimum health status.
Why is that?
Why is health so important that it determines who ought live or die?
Why indeed this whole obsession about 'health'. We're killing ourselves with it.
What exactly is it that we're so busy doing that we can't accommodate people with disability or who can't 'compete' - literally - in the same fashion of the majority?
Really - what is your purpose? What are we striving for that means we have to abandon those that don't come up to standard?
And why do we have to live the way we do?
Why do some people get excluded on the basis they don't fit the mold?
Disability is relative.
Disability exists not because people are limited in what they can do - they are limited by the society they live in. By the judgement that they are 'less able' than others.
What if one day we find we were meant to be flying? Are all us bipeds suddenly 'disabled' because we aren't?
If we built a world with wheelchair access and had certain houses built with such potential uses in mind; if employment opportunities were geared to accommodate not just the average societal member - but as many members as possible - then it would be far less a disability.
If it is a disability to live in the society in which we maintain.
Why can't we change it?
I work as a nurse ergo I am sometimes required to hear this apathetic bullshit face to face.
My choice to enter into the debate is an opportunity to rejoinder the arguments I hear at work and exercise a bit of freedom of speech away from the risk of becoming employably-challenged.
Anon: 2-17:
You are the only disability in my life. I am happy for you to correct this for me.
Hello penpusher :)
"Anon: 2-17:
You are the only disability in my life. I am happy for you to correct this for me."
I have no idea what the hell that means, but hey, anything to oblige an incoherent, abusive internet troll. Trolls are the best people ;)
So here goes:
Ian, we are not the only disability in your life.
There.
~Anonymous 17.
‘Crippen writes as a voice of one side of an argument’
Me Ian, of course he does, it’s his blog not a public discussion forum.
However what’s far more interesting to most of us is how often something that starts life as a bit of a rant evolves into a complex discussion about important issues.
And in fairness to Dr Crippen he always publishes every comment no matter how mad, sad or, indeed, rude, they are.
Not only does my son have Downs Syndrome BUT *gasp* Coeliac disease too!!!
*snigger*
.....but I digress.Things have changed in the 16 yrs since I had my son.
When I had my son (age 23) it was VERY doom and gloom....but in fact it is a burden I WILL shoulder simply because he's mine and I love him.
I'm not anti abortion - but I do think if you're going to go in for having children you've no right to expect perfection (and I think you should be MORE aware if you're over 35)
I in fact didn't know my son had Downs until he was born ...so that decision was made for me...
...and yes, I 'know' he'll never be fully independant.
I in fact NEVER joined the Downs Syndrome association - couldn't really see what they was offering?...
It is at the end of the day a very personal decision, every bodies family dynamics are different.
Some are just not cut out to do it.
I think Crippen's comments about disabled people competing in the paraolympics and the special olympics say far more about his attitude to the disabled people he purports to care about than they do about anything else. I haven't ever seen him say that the normal Olympics - or any other sporting tournament - are uncomfortable to watch or a chance for people to prove themselves to others. Why should disabled people be denied that choice?
Yes, of course, there are many, many disabled people living in poverty (partly because too many people, like Dr Crippen, believe they can't work), struggling to cope with daily life, having a horrible time and rotten quality of life. There are plenty of non-disabled people living in poverty, struggling to cope and having a shit time too. But if some of those people can find something they are good at, something they can excel at, why shouldn't they give it their best shot?
As for his remarks about people who disagree - not everyone who disagrees is doing so to be seen to be politically correct, you know. Sometimes we just think he's wrong. Yes, wrong. Doctors can be wrong.
'You ignominious megalomaniacal bastard child of Hitler.'
Now now, temper temper.
'Why should my world be tainted by bigoted obnoxious arrogant aloof wankers like you and why should I listen to your ever-so medically auspicious but socially inept bullshit?'
Ian old china I have a fantastically good suggestion for you.
Don't read this blog. Have a look at some porn instead. You'll feel better.
You see, you are rather typical of a phenomenon that I have noticed over the past few years. Someone starts a blog. Someone else then tries to take it over, usually by carping and sniping. It's the views they can't stand, but they don't have the wit to start their own blog, and if they do they certainly don't invite comments.
I await your reply with interest. You won't be able to resist.
one reason i married my wife is because she and her family wouldn't hesitate to abort a foetus if tests,scans detected an abnormality. DSA don't like this,because if all downs mother were (a) detected (b)took the same line,they'd all be out of a job
I think Crippen's comments about disabled people competing in the paraolympics and the special olympics say far more about his attitude to the disabled people he purports to care about than they do about anything else. I haven't ever seen him say that the normal Olympics - or any other sporting tournament - are uncomfortable to watch or a chance for people to prove themselves to others.
++++
Oh I hate the ordinary Olympics too. God they are so boring. Never watch them. And I bitterly resent that amount of taxpayers money that is spent on them too.
I stand firm behind my believe that the para-olympics are a hypocritical indulgence and a waste of taxpayers money. Money that would be better spent on care in the community.
John
"Disability is relative.
Disability exists not because people are limited in what they can do - they are limited by the society they live in. By the judgement that they are 'less able' than others.
What if one day we find we were meant to be flying? Are all us bipeds suddenly 'disabled' because we aren't?"
It appears that sociology gets more time than biology in nursing these days... Do they even cover it? Christ it's not even biology, but obvious physics, humans are a little more aerodynamic than a house brick. You may as well suggest we will discover that we are 'supposed' to be as strong as grizzly bears, even though our anatomy clearly prevents us from being so.
"I am compelled to fight the evil bastards of this world.
And Crippen.
From my keyboard.
You want some?"
Sure, I've got a blog. I think you can probably just work out how to get there, with your crazymad Net Skilz. Bring it on, tough guy.
But don't whine about how you are forced, forced to read and comment on anything. You do so because you are ever-so-slightly deranged, and have an overweening ego problem.
In fact, why don't you go into politics instead?
"What exactly is it that we're so busy doing that we can't accommodate people with disability"
Last time I looked, there was a whole host of legislation in this country doing just that, sometimes to the most absurd degree and defining the term 'disability' into utter meaninglessness...
Where to begin?
ok.. for those who kindly advised me I don't need to look at this blog if it offends me....
Err... you didn't have to comment if you don't like my posts.
How does that work?
Everyone has the inalienable right to rebuttle - it's called free speech. Ain't it, John.
Lady JuliaM...
Last time I looked, there was a whole host of legislation in this country doing just that, sometimes to the most absurd degree and defining the term 'disability' into utter meaninglessness...
Why does it need legislation to make it happen?
State interferes when community fails to tolerate and accept others' rights.
Acceptance and tolerance is not just about physical disability. It's about all manner of marginalised cultures who don't fit the mainstream criterion.
And it's much the same reason as to why people commit suicide.
People are not intrinsically valued. Value is ascribed to or nurtured in the person by the society in which that person exists.
The value of one life is directly related to the sense of worth it is given, or the person feels it is given, by others in that group.
When this sense of value is gone - well, what's the point of living?
If you want to tell those with disabilities they're just wasting their time - and lets just scrap this whole idea of inclusion and paralympics and right to life - how is this a good thing for those who have or later develop disability?
And whoever bleated about sociology - the general poor state of everything can be traced back to the fabric of the community. So it's kind of important to think of that when you work in health care; especially mental health care.
Oh how valued the person with problems must feel to know you guys are there to help out.
You haven't been sampling your patients' meds at all, have you, Ian?
Do you even know what point you're trying to make? Is it that unless we all pretend disability isn't "real" and is just an invention of our wicked society, disabled people will commit mass suicide? Or are they going to do that if the Paralympics gets axed and the money put into community care? Or is it because the mean old doctor said mean, nasty things about the Paralympics? If it's none of those things, then what is it?
"Everyone has the inalienable right to rebuttle..."
Or even rebuttal...
"Why does it need legislation to make it happen? State interferes when community fails to tolerate and accept others' rights."
You cannot mandate acceptance. You can try, but you'll fail...
And while the State crushes small businesses underfoot because they haven't installed ramps, closed-hearing loops and disabled toilets, try getting in the Underground while in a wheelchair.
"Acceptance and tolerance is not just about physical disability. It's about all manner of marginalised cultures who don't fit the mainstream criterion."
They can't all pick my pocket. Sorry, they just can't...
'Anonymous 17 said...
You haven't been sampling your patients' meds at all, have you, Ian?'
I think he does this all on his own.
I have to deal with people like Mr Ian at work. They are a major pain in the arse. Opinionated, convinced of their rightness, usually crap at their job as they spend so much time telling everyone else how to do theirs.
And they never, ever, listen. If you read JC's posts you will see that he covers every point Mr Ian rants about.
O tempora, O mores.
Ho hum.
Excellent post Dr Crippen.
I think it raises the important concept of responsability which is like a black hole here in the UK. Every prospective parent has to weigh up whether they can afford (both financially and emotionally)the cost of having an abled or disabled child. She did the maths and decided she couldn't - why is that frowned upon when there are many others having children expecting the "society" to bring them up.
What am I missing here?
Julia -
Or even rebuttal...
Yes, good stuff. My spelling error makes you right.
You cannot mandate acceptance. You can try, but you'll fail...
Why will it fail?
They can't all pick my pocket. Sorry, they just can't...
Ahh! Cos of you.
Crippo - excellent insight. You do have to deal with people like me at work. You perceive we are not good at our job because we do not think as you do, act as you do or simply do as you say.
Your citation is most apt - these are such times and these are such customs - of change.
If we don't need to waste money on Paralympics to give the disabled some recognition and opportunity when it could be put into better health services* - then we don't need to pay for top up cancer drugs when we could be putting the money into research.
Why is one disability more worthy than another?
"Opinionated, convinced of their rightness, usually crap at their job as they spend so much time telling everyone else how to do theirs.
Sorry, is this me or Crippen you are describing? Despite your irrelevant and irreverently erroneous universal instantiation, I see little difference - other than in the nature of the opinion either of us espouse. After all, I am a nursey and John does like to tell me how to do my job and does have a strong opinion about it - ergo, he must be crap at his job?
As for "JC's posts" - I'm responding to (or having a rebuttal at, eh Julia?) those who directed comments at me. He hasn't exactly 'replied'. My original comment remains there for John to respond to but that's not really important. I said my thing. John read it. Now I'm just playing with the crusty pieces of clinker that are left behind.
Occasionally I do prevaricate him into a response but you plebiscites trounce all over it like I was talking to you and he skulks off into a dark corner. Tha'ts how it is. If you don't like it - take their advice to me and don't read any of it. (Unless of course someone has a gun to your head... )
Anon 10:30 raises the issue - 'responsibility'.
She did the maths - but the maths had to incorporate the place she was bringing that child.
100 years ago - if a child was to be born disabled - it was so born. And the parents, the family, the community and the state supported that child. (For State support - google Parens Patriae c.1500)
In that time - what has changed?
Down Syndrome still happens. So how have we improved the stakes? We kill them off.
When we get test for the MS gene - or the parkinsons gene - or the childhood leukaemia gene - are we just going to kill them off at conception? Probably not - because these are medical disorders - not intellectual ones like Down or Prader Willi or Kleinfelter. I mean - at least you can pretend the medically sick ones are 'normal' huh?
Yet for these medical conditions we try to invent medicinal cures and spend millions of money doing so.
Why not invest that money in social cures that will improve the quality of life of those born with intellectual disability?
Because responsibility ain't like it was - people no longer want to tolerate a social responsibility - it's all a very personal and individual one.
They can't all pick my pocket. Sorry, they just can't...
'if a child was to be born disabled - it was so born'
No. You have a very rosy idea of the good old days if you think that was the case. Severely disabled children, at least the obvious ones, were often stillborn. Now read between the lines.
We also as a society will have to have the eugenics debate one day. There will be no avoiding it. Think back to before the War (2) when eugenics was (were?)all the rage, with loud exponents such as Bernard Shaw. A doctor was acquitted of manslaughter in the USA in I think 1917 when a Down's syndrome child did not survive. The American eugenics movement inspired Hitler, who then took their writings to such a revolting conclusion. We have moved beyond that.
But what are we doing as a society when we resuscitate 24 week gestation children, who are then blind, deaf and severely handicapped both mentally and physically? Who will look after them once the parents die? How will they live? The number of relationships that are destroyed and other siblings damaged by the care of such children is a cost not often mentioned by the exponents of 'lets save everyone'. Are we doing the right thing? Can we afford this behaviour in such cash deficient times?
Such questions may be very unpopular. But we badly need this debate.
Occasionally I do prevaricate him into a response but you plebiscites trounce all over it
Ian, my little trollikin, I think you need a dictionary to go with your thesaurus.
Yet for these medical conditions we try to invent medicinal cures and spend millions of money doing so.
Why not invest that money in social cures that will improve the quality of life of those born with intellectual disability?
So your solution is... take all money from medical research and give it to the Down's Syndrome Association (and similar bodies)?
Yep, that's the way to reduce suffering and create a more caring society. I certainly can't see any flaws in that plan whatever. Can anyone?
The best thing is, it doesn't require any judgement whatever on the relative worth of anyone's life. Because let's face it, sick people are sooo depressing... it's just a foregone conclusion that none of them deserve to live, right?
Anon - 11:45:
"Parens patriae relates to a notion initially invoked by the King's Bench in the sixteenth century in cases of non compos mentis adults. The actual term was first recorded in 1610 ... The parens patriae doctrine was gradually applied to children throughout the seventeenth and eighteenth centuries, and has since evolved from one granting absolute rights to the sovereign to one more associated with rights and obligations of the state and courts towards children and incapacitated adults."
Incapacitated adults in the 17th Century? Surely they were all "stillborn"?
"severely handicapped both mentally and physically? Who will look after them once the parents die? How will they live?
Exactly my point. Who should?
I believe "we" should.
The number of relationships that are destroyed Oh for heaven's sake - relationships destroyed? The only one destroyed is that of a care for another person - regardless of 'ability' - by a society that fails to give a shit.
Anon 17 - So your solution is...
No. That's not even close to what I wrote. My point was - who chooses which are those causes we invest in? And what it is we're prepared to invest?
Science and money? We're all over it. Waiting for the day we create the panacea cure.
But why don't we invest in a society worth living in? One where when you see a guy on the side of the road with a broken down car - you offer to help, take him home or to the garage. How many people needing help do you walk by? (Unless like John you're getting paid to listen to their ills).
It's too much trouble. We'd rather pay someone else to take our social issues away - like mental health services or prisons - where the majority of those incarcerated are there for social reasons - society doesn't want not just their behaviour - it doesn't want their problems either.
Now we're into promoting the abortion of Down syndrome fetus because - who will look after 'it' when the parents are gone?
Well if that's the case - who will look after Crippen when dementia sets in and he's unable to get to the toilet independently?
Nursey will - that's who.
A comparison if you will - here in Oz - the majority of social care is provided by non government organisations. It is funded part by state and part private. There's something for everyone. Well - most. But because it's staffed by unskilled but caring people - they don't know what they need to know and much of the stuff gets missed.
On the other hand - UK - state picks up the tab and provides the service for everything. It's costly - and it's selective. But it is also part of the reason that social fabric has failed. Those great socialist policies of health for all and welfare payments for the sick - tho the sentiment was right - has evolved into a state of paying them off so society doesn't have to care.
From very limited research I have gleaned that Parens Patriae c.1500 refers to the concept of the state taking responsability of a minor in the face of mental illness. Its a terrible thing to have to happen and I guess the mother in this instance wants to prevent it.
Also, I second the rose coloured argument mentioned above - are you trying to tell me that people so low down in Maslows Heirarchy of needs had space and time for much charity?
In addition, its important to remember that in those days, community referred to a group of people that most likely shared a substantial amount of DNA and therefore it was in everyone's interest to ensure survival. There are not many of such communities today.
Lilliput
Ian - get back under your bridge
Kirsten - what a load of woolly, lefty, waffley nonsense. "Disabled people are poor because society tells them they can't work"
HAHAHAHAH *pauses for breath, aided by terbutaline* HAAAHAHAHAH
Society has told me nothing love. I'm intelligent, educated to MSc level, a joy to be around. It isn't society that keeps me in my place, it's the bloody incurable neurological disorder I've got, you dozy cow. Yes I'm sure any workplace would be happy to let me carry around my sick bucket with me, cope with the faecal incontinence, buy me a 37" monitor to work on, cope with the fact that often I sleep for 30 odd hours at a stretch, oh and let me loose on their client-base when I'm off my tits on all sorts of lovely opiates. Did I mention the meds make me hallucinate? God, that's a million kinds of fun. "Yaaaaay look, Santa's here with his crowd of Christmas bears!" (I shouted that last night while merrily hallucinating).
Society? I've never listened to it. I've pushed myself for years, against advice from my doctors and my better judgement, and now it's time to listen to my body which says loudly and cleearly "YOU'RE STAYING AT HOME FOR A WHILE"
I'm only 31. I'm not happy that I'm not working, but I do not need you and your Sunshine Brigade to say "You CAN be integrated" or "Of COURSE you can work" "You can do AAAANNNYYYTHHIIING!"
I'm sick of the guilt-trips about athletes with no legs, or being told that "Disability is a state of mind man, we just have to change society!" It's bullshit, it's offensive, and about as patronising as "Does she take sugar?"
Mr Troll said...
No. That's not even close to what I wrote.
Oh, yes it is.
You said:
"Yet for these medical conditions we try to invent medicinal cures and spend millions of money doing so.
Why not invest that money in social cures that will improve the quality of life of those born with intellectual disability?"
I replied:
"So your solution is... take all money from medical research and give it to the Down's Syndrome Association (and similar bodies)?"
Not even close, huh?
Mr Troll continues...
But why don't we invest in a society worth living in? One where when you see a guy on the side of the road with a broken down car - you offer to help, take him home or to the garage.
I always do. Don't you? (Ha, ha, betcha don't!)
How many people needing help do you walk by?
None. I always help people who need it, even when it's highly inconvenient for me to do so. Don't you? (You don't, do you, Trollboy?)
The Troll from Downunder continues...
A comparison if you will - here in Oz
Noooo! He's one of me! I mean one of us! The shame!
Oh well, lucky I didn't make any snide remarks about the standard of British education, as exemplified by Trollboy here.
- the majority of social care is provided by non government organisations. It is funded part by state and part private. There's something for everyone.
Yeah, there's several hundred cash-strapped charities fighting each other tooth and nail for every dollar they get, and there's a bunch of private and semi-private nursing and home-care agencies which hire unqualified kids and exploit the hell out of them. Australia leads the way!
'Oh for heaven's sake - relationships destroyed? The only one destroyed is that of a care for another person - regardless of 'ability' - by a society that fails to give a shit.'
I have finally realised that Mr Ian is NOT clinical. He's a desk jockey. Anyone who had ever worked with and for the disabled would know EXACTLY what I am talking about and EXACTLY what I mean.
He don't. And as everything he says is theory and not actually based in reality, but on what he looks up on wikipedia, there ain't a lot of point in indulging in debate with him. Or her.
So in future it's DNFTT.
Trig Palin said...
"I'm sick of the guilt-trips about athletes with no legs, or being told that "Disability is a state of mind man, we just have to change society!" It's bullshit, it's offensive, and about as patronising as "Does she take sugar?"
I'll drop the troll-baiting for the moment. Trig Palin, I hope you won't be offended if I offer you my sympathy for what you're going through?
As for things like the Paralympics, and the whole positive-thinking thing... I'm ambivalent. As I understand it, disabled people who are able to work still face discrimination, so maybe a bit of propaganda is in order. Certainly, when it turns into platitudes about how anyone can overcome anything... well, yes, it's a bit much.
Anonymous said...
"I have finally realised that Mr Ian is NOT clinical. He's a desk jockey."
My own theory is that he's really the hospital cleaner. I'm just surprised he hasn't promoted himself to "brane surjun" yet.
Trig Palin - do you have a reading disability? Because I didn't say "Disabled people are poor because society tells them they can't work"
I said "there are many, many disabled people living in poverty (partly because too many people, like Dr Crippen, believe they can't work)" which is not the same thing. So if you're going to insult me, patronise me, and preach to me, do it on the basis of what I said, not what you think I said. Love.
Trig Palin - do you have a reading disability? Because I didn't say "Disabled people are poor because society tells them they can't work"I said "there are many, many disabled people living in poverty (partly because too many people, like Dr Crippen, believe they can't work)" which is not the same thing. So if you're going to insult me, patronise me, and preach to me, do it on the basis of what I said, not what you think I said. Love.
+++++
Kirsten, like so many blinkered zealots, you don't mind misrepresentation to make your point. Many disabled people work, and more should.
I have never said, nor do I believe that "disabled people don't work".
You spoil your point by misrepresentation. Also, it's rude
John
Any of you feel like joining the parellel argument on the Bad Science site? You want to see zealots– as opposed to deranged trolls like Mr Ian– en masse? Be my guest. (Oh, and you won't call Kirsten a "blinkered zealot" after that. Trust me, you won't.)
I've given up in disgust.
Much as I admire Mr Ian's earlier explosion of righteous ire, I think I like Sharon's paragraph the best, namely:
"Do you think money is wasted on big sporting events for everyone, or only on those for disabled people? Should only the Paralympics and/or Special Olympics budget be given over to making reasonable adaptations to the homes of disabled people, or should the main Olympics be affected too. What about the arts budget? Where should the money come from to make these people's lives that bit easier?"
Dr C's comments to invite the inference that it's either the paralympics or a disabled shower for all. Perhaps there could be both? Maybe don't have all the fireworks on New Year's Eve but pay for a dozen carers instead. Don't save that Titian masterpiece, widen Mrs Groggins' bathroom door instead. It's all about priorities and it's an interesting debate to have (and an impossible one to conclude).
The paralympics leave me ambivalent too. I can't say I enjoy watching many of the events and I don't really know if the handicapping system (so to speak) can ever be entirely fair/logical/understandable but equally I admire any athlete whose commitment and hard work takes them to the top of their game; and also I think if I were to become disabled, I'd be royally pissed off to be told I therefore couldn't experience the thrill of competition, of demanding physical and mental challenges, and of winning.
So just because I might not want to watch it all, I don't think that makes the paralympics wrong.
ps Oh, and Neil - yes you of the extraordinary statement 'one reason i married my wife is because she and her family wouldn't hesitate to abort a foetus if tests,scans detected an abnormality.' - you romantic devil, you.
Trig: Society has told me nothing love. I'm intelligent, educated to MSc level, a joy to be around.
Then to all intents, you are "integrated" - tho I do despise the sunshine brigade for the same reasons we have stupid terms like 'integrated', 'social role valorisation' and 'tolerance'. I'm certainly not seeking to preach to the converted - your disability may exist in the physical - but it does not in the spiritual. Not all are so fortunate or capable.
For those with less capability - there is a need to advocate, preserve and promote their right to 'inclusion'. Which Crippen would seek to destroy by not wasting money on things he doesn't understand - like global motivational events such as paralympics.
Anon 17: I have finally realised that Mr Ian is NOT clinical. He's a desk jockey Haven't spoke to a patient in about 6 weeks. Got a new job n all - and my own mop.
"So your solution is... take all money from medical research
ok - for the last time -
I do not advocate one need over another.
My example was to illustrate that you cannot single out areas of more worth than others and declare the whole paralympics a waste of time - when there are equally dubious affairs going on - perhaps I should have used the Art example instead - but my point is:
Paralympics builds upon the social status of people with disability. Social status - inclusion, acceptance, tolerance - is often a far bigger disability than the condition that disables them.
It is also non sequitur to John why we should have such things - he doesn't understand the social concept. Hard science is his only trusted foundation. Hard science is great but it isn't the panacea - but there is much to gain from the softer science stuff too.
And finally, Anon 17 - nice sentiment mate but really, the public display of sympathy for Trig - I'll drop the troll-baiting for the moment. Trig Palin, I hope you won't be offended if I offer you my sympathy for what you're going through?
"I'll drop..." - how magnanimous of you.
"I hope you ... " -
For fucks sake. You patronising and false wanker. It's like watching a politician kiss babies. Be sure to pat Trig on the head to show her you care.
to scribbler,
thanks for the ??compliment . i knew all this before the the engagement . BTW v.polite response , i really mean that!!
good luck to you !
Mr Ian,
are you offended the Anon17 has expressed sympathy for Trig's disability, or am I misunderstanding? The woman has clearly said that she suffers. Does one have to be patronizing to feel sympathy?
'You patronising and false wanker.'
FFS write English you deranged little prat.
Your writing is true masturbation, however.
The Troll with a mop said...
"Then to all intents, you are "integrated"
(...)
...your disability may exist in the physical - but it does not in the spiritual. Not all are so fortunate or capable."
*jaw drops* Oh. My. God. Ian, are you for real? Or are you just doing this as a really mean, tasteless joke, to satirise Michelle Dawson and the rest of the disability-rights movement?
Btw, the way, Ian, you misattributed the theory that you're a desk-jockey to me.
I'm the one who thinks you're the janitor.
Don't be ashamed, Ian. We need people to mop the floors. It's an honourable profession.
tom1 - I take offence at opportunistic behaviour.
Anon 17's original contribution:
Tell me, Mr Ian and Ms Dawson– just to satisfy my curiosity– are all handicapped people as paranoid and hysterical as you two?
Because if so, the more screening, the better. Bring it on!
.. - and the rest throughout - does not indicate any 'sympathy' at all for those who 'slipped through' the screening.
I apologise to Trig for using her in this examplar - but in her post, that not only doesn't seek to elicit an iota of sympathy, but in fact seeks to tell everyone to get off her back and "I'm ok, you're ok" if you just leave me alone I'd be better off.
- Anon 17's response is to offer the cliched irreverent platitudes of "Oh I'm so sorry for you".
It's not for me to speak to how Trig may feel about it - I'm not concerned with that. My disgust is the 'politically opportunistic manner' of displaying a caring attitude by expressing something to Trig that wasn't even solicited.
Millions are statistics - but one is a tragedy.
Anon 17 - Can you share with me your value base? All you've done is pretty much the ad hominen and no substance. I've presented my thoughts - are you simply in agreeance with John?
Your one expressed opinion As for things like the Paralympics, and the whole positive-thinking thing... I'm ambivalent. As I understand it, disabled people who are able to work still face discrimination, so maybe a bit of propaganda is in order. Certainly, when it turns into platitudes about how anyone can overcome anything... well, yes, it's a bit much.\
... seems to be a bit wishy washy - hmmm yes maybe hmm... mebbe no ... hmmm...
The platitudes about overcoming anything are a little stretched - tho I do agree there are those who push people beyond their evident capabilities - but things like paralympics and showcasing people who excel are motivational and inspirational. What else is sport for? It's not like it cures anything or builds anything. It provides entertainment, inspiration and motivation. Seeing others achieve to the best of their ability - but for those with disability who only get to see able bodied achievers - how is it motivating and inspiring *their* ability?
Mr Ian... yes, my original contribution was pretty nasty and I freely apologise to anyone who's been offended by it. (I actually came back here for that purpose.)
My meaning was not that all disabled foetuses should be aborted, but that that *if* all disabled people *were* like you two, it would be a wonderful argument in favour of eugenics*. Of course, they're not, so it isn't. But I still shouldn't have said it. I was an insensitive jerk acting on impulse. I'm sorry. (Not to you, though, Ian.)
For Heaven's sake, though, look at the posts I was responding to– wait, though, you can't see anything at all offensive about your Deranged Rant #1? Of course not.
As for "the rest throughout"– I have no idea what you mean. As usual.
As for accusing me of "ad hominems"– your latest tit-bit from Roget, is it?– nope. They're not ad hominems, Ian. They're
insults. Use of ad hominem would imply that we were having a debate and that I considered you capable of putting together a coherent argument.
As for you saying I'm "wishy-washy" about the Paralympics– Nope. I'm ambivalent. Believe it or not, that's a perfectly valid attitude.
As for my expressing sympathy– no, Ms Palin did not ask for sympathy, but what she described made me think she deserved some. (I get quite upset when I hear about a person suffering like that. It's not something I'm faking to get on side with her, if that's what you think. You would.)
Finally, what do you mean by "politically opportunistic?" Do you? Do you ever know what you mean?
*Yes, I'm aware now that you're not a disabled person, but have merely taken it upon yourself to rant on their behalf. I'll take it back– you're in fact a marvellous credit to the fit, healthy and able-bodied. And to Australia, naturally.
Anon 17 - I'll skip the embarrassing - 'Yes I'm really an insensitive bastard' - and of course we won't notice how you tried to make up for it by patting Trig on the head as you passed by her.
Oops.... I didn't skip it.
Well anyhow...
For Heaven's sake, though, look at the posts I was responding to–
My post was aimed entirely at John.
Who asked you to respond?
Does John take sugar?
Dickhead.
And on that note....
It is right to complain about the poor state of service and ask what's going on.
Though it seems the paralympics has some wealthy sponsors -
http://en.paralympic.beijing2008.cn/sponsors/sponsors/
But it's not ok John to declare to everyone what a waste of money it is to have a paralympics instead. Pick on something else - and I forget the commenter - like perhaps Art?
The statue cost £80,000 and was funded by the Works of Art Committee, supported by the Speaker’s Art Fund. It was agreed that Margaret Thatcher would be shown during her last term of office, 1987-1990
http://www.margaretthatcher.org/commentary/displaydocument.asp?docid=111416
The WoA committee can be found here - along with your tax money:
http://www.parliament.uk/parliamentary_committees/acwa.cfm
So let's have great services - and let's let those who want to compete to the best of *their* ability do so.
And if a parent wants to terminate a child with likely disability. So be it. I support their right to make that decision.
One thing you said John I completely agree with -
I am sick and tired of the canting hypocrisy of the media and the large majority of our pseudo caring population ... but I disagree with your answers to the problem.
Does anyone else still have a problem?
Jolly Janitor Ian continues...
My post was aimed entirely at John.
Who asked you to respond?
What? Who asked you to respond to his post? I was– however crassly and insensitively– giving my reaction to an "argument" that, in so far as I could disentangle it– ran thus: "How dare you have a different opinion to me? Let me now prove the worth of the disabled by launching into a long, gibbering, abusive tirade".
I assumed you were disabled yourself because your reaction was so extreme– it sounded like someone with a personal stake in the issue (to put it mildly).
And because of this line:
What exactly do you think you empirically 'know' about being disabled?
Saying that to a doctor– who has said he treats people with disabilities– implies you "empirically 'know'" more than he does, i.e. that you have personal experience. At that point I hadn't realised how tenuous your grasp of the English language is.
By the way, I am explaining myself for the benefit of any rational human beings who may be reading this, i.e., not the troll.
–Anyway, troll, it seems I was wrong and you've got no excuse whatever. You're *cough*"normal"*cough* Well, congratulations. *slow clapping*
Trollboy continues...
Does John take sugar?
Does Ian?
Does anyone else still have a problem?
You're it, my dear little troll.
Don't try that trolltastic tactic of pretending you've been arguing in a nice, reasonable fashion all along. People can read your earlier posts, you numbskull.
What? Who asked you to respond to his post? John did - by having a comments thread and promoting his principle to not censor anything then the invitation to respond is implied.
I assumed Yes you did. And now you assume I don't have a disability.
By the way, I am explaining myself because you need to explain why you're explaining. Are you half way out the hole yet?
Does John take sugar?
Does Ian?
I already answered that.
Mr Ian doesn't take sugar said...
Thursday, December 04, 2008 10:08:00 PM
I love the new ones. They taste so fresh.
"I don't know that the 2012 paraolympics will cost the UK. Say, for sake of argument £10 million (I bet it's more.) And then think what we could do with £10 million earmarked to treat, help and support all the CP sufferers in the UK"Take this argument to its logical conclusion and condemn ALL public spending on extravagances like the 2012 Olympics.
++++++
Could not agree more. I would scrap taxpayer funding of the olympics tomorrow. What a waste of money
John
Since my partner is disabled, and a paralympian, I'd like to comment.
I agree with Dr. Crippen that it would be better if the money spent on the paralympics were spent on better facilities/care/opportunities/heating/medication/whatever for the disabled. The reality is that that simply would not happen - cancelling the paralympics means the money would either not be spent at all, or spent in economically more beneficial areas.
Paralympians are generally extremely dedicated people, often professional athletes, and just like the olympics, the paralympics gives them a showcase and a platform, and an area in which they can excel.
Many disabled people are acutely aware of being pandered to, and being treated as cute (or not) objects of pity, rather than human beings with feelings, wants, desires, and drives like the rest of us.
My partner is a successful professional, overcoming some quite incredible obstacles to be a 'productive member of society' - few people, disabled or otherwise, have my partner's determination.
Overall, I'd say Dr Crippen is right in decrying the lack of funding to make disabled people's (and their carers) life more livable, but presenting it as paralympics /or/ money for the disabled is a false dichotomy.
John, I read your article and the comments above with great interest. If I read you right you are arguing that there are a spectrum of people labelled as “disabled”. This covers people who can achieve as much as anyone else given a little technological help and trivial alterations to work places, vehicles etc. It also covers people who are truly incapacitated in body or mind and who need real care. You contend that the Downs pressure group, in trying to represent sufferers interests, argue that they can be part of the first group, when in practice there is very little chance of this happening. That there are two ideological flaws in this approach:
1. It contains as a hidden premise the idea that those people in the second group are indeed less worthy in some way than those in the first group.
2. It trivialises the impact of the condition whose sufferers they are trying to support.
It also has two adverse practical implications:
1. The position mitigates against the groups main function which is to secure appropriate care for people with Downs.
2. It gives potential parents unrealistic expectations of the quality of life a child with Downs can expect to experience.
Finally that one unwelcome result of this ideological mix up is a distorted view of decisions people make when considering whether or not to abort a foetus with Downs. It does indeed distort the hard cost/benefit analysis by underestimating the costs to the parent and over estimating the quality of life of the child. I agree this is an unfortunate place to have got themselves.
The other position they take on termination, which is the one you seem to object to most, is unrelated to the mistakes I have outlined above. This is that a decision to terminate a foetus with Downs amounts to contending that those currently alive with Downs would have been better of if they had never existed or perhaps that the world, by dint of saving parents, siblings and the state the strain of caring for a sufferer would be better of if they had never existed. They are right, how could having a termination on the grounds that the resulting child would have Downs mean anything other than that the child or the world are better off without that child existing?
The question is whether this is position is morally wrong or not. It may be offensive to some, but that is not the same thing as being wrong. It might be that the states support for such terminations turns NHS support for Downs suffers from humane and necessary care into a regrettable exercise in caring for those who made it through the net, but that is a hypothetical question about the motivations of various arms of the state and not the kind of consideration we can require of a couple considering terminating a Downs pregnancy. One final possibility is that the moral question is so finely balanced that the correct course of action depends on individual circumstances of income, sibling numbers etc.
Under this final interpretation a termination does not have to mean that all Downs sufferers ought never to have existed only that conditions weren’t optimal in that particular case. It also lets us put the final call on whether or not a termination is the right decision with the parents, a difficult decision fraught with doubts and possible later regrets, but still a decision which can be respected and supported which ever way it falls. I recognise this is a fudge, but it is a fudge that lets us support and respect people making difficult decisions about termination whilst recognising and meeting the true needs of the Downs sufferers and their carers we have today, without regret that the Downs sufferers themselves were ever allowed to exist.
The radio 4 program which sparked this whole thing off, stripped of its simplistic moral framework and mistaken interpretation of Downs birth rates, then becomes an interesting insight into the lives of those who chose to keep the child.
Ou8r Lord and Master John said...
Could not agree more. I would scrap taxpayer funding of the olympics tomorrow. What a waste of money
So are you saying because of Jenny's amniocentesis we should scrap the Olympics?
We've had this debate before John and I understand you don't 'get' my PoV - but to recap:
Success in life can be founded in many ways, but not all suit everyone -
It's not all about intellect.
It's not all about wealth.
It's not all about status.
It's not all about achievement.
It's not all about recognition.
It's not all about optimum health.
It's not all about optimum ability.
It's not all about being right all the time.
But it is some or all of those things in the best way we can have them.
Olympics is a pathway to good health, status and achievement. Possibly also wealth, recognition and certainly optimum ability (in relation to other competitors).
You have your academia, your social status, your wealth (and presumably your reasonable health). This blog is perhaps a source of wider recognition (in the absence of the book - and I do hope the memoirs are in process) - as well as validation.
No doubt, up on your wall somewhere you have (or have had) your academic achievement on display, if only for yourself - perhaps not.
Olympics - or any global process of recognition (think Nobel) - is about rewarding those who strive and achieve. If it's not your cup of tea - then fine. Personally I don't enjoy ballet; opera or looking at paintings - but enough money goes into those for the enjoyment of others - as well as recognition of those who achieve well.
Paralympics is an(other) opportunity for people with disability to attain what they choose to, to the same degree of recognition and status as anyone.
Scrapping it altogether and investing in other direct care?
Give a man a fish....
Could not agree more. I would scrap taxpayer funding of the olympics tomorrow. What a waste of moneySo are you saying because of Jenny's amniocentesis we should scrap the Olympics?
+++++
Don't be silly
John
I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.
Sharon
http://www.autoloans101.info
Post a Comment
Subscribe to Post Comments [Atom]
Links to this post:
Create a Link
<< Home