Ship of Fools: Alex Spourdalakis

Thread: Alex Spourdalakis - the debate thread Board: Oblivion / Ship of Fools.

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Posted by Sioni Sais (# 5713) on :

On the Hell board Josephine started a thread about the killing of a fourteen-year old autistic boy by his mother and Godmother. The OP and some other threads expressed anger but there was a fair amount of debate too.

We've thought about Josephine's suggestion that the thread be transferred here and the hosts in both places agree we need threads in both places: anger and rants in Hell, cool(er) debate here.

So, here's the OP (for information), over to you for the discussion.

Sioni Sais
Hellhost

Posted by tessaB (# 8533) on :

I know many mothers of disabled children (myself included) who have had what I call 'brick wall' moments. The idea occurs when driving that speeding up and hitting a brick wall would make a lot of problems go away.
And then we realise that we have just thought of our beloved child as a problem, feel rightly ashamed of ourselves and do not do it .
Even with my mainstream child I had times when she was a baby when I had to put her very, very gently in her cot and walk away. Tiredness and frustration can take it out of anyone. That is when you need to ensure the child is somewhere safe (even putting a lock on their bedroom door for emergency use) and leave them alone for ten minutes.
Yes, I can sympathise with the grief, exhaustion and lack of hope. No, I could never see my child as someone who has less right to live than anyone else. I thank God for him every day, he has been a true blessing in my life.

Posted by Twilight (# 2832) on :

I doubt if parents who kill their child and then themselves are thinking that the child has less right to live than anyone else. My guess is that they think their child is living a life of constant physical and mental pain with no hope of improvement. They kill the child to end his pain and then themselves because they know they won't be able to live with the knowledge of what they have done.

It's terrible to think of what life must have been like for this poor boy, but I would imagine that his mother's life might have been equally terrible if every single day was a series of frightening, exhausting episodes.

One of the articles linked in the Hell thread decries our tendency to feel sympathy for the parents who do things like this -- but why shouldn't we? To feel sympathy is not to say that what they did was right -- of course it is always wrong to take another life -- but if Alex himself was occasionally violent we are expected to excuse him because he was disabled. Where is the line on the scale of impairment that says his mother was not also disabled to some extent? Add low intelligence and probably some depression to poor physical health and chronic sleep deprivation and maybe her cognitive abilities and impulse control were not much better than his.

Posted by Josephine (# 3899) on :

quote:
Originally posted by Twilight:
One of the articles linked in the Hell thread decries our tendency to feel sympathy for the parents who do things like this -- but why shouldn't we?

The issue, I think, is that people are not sympathetic towards parents that are accused of killing their children -- think of JonBenet Ramsey or Caylee Anthony or any of the other children you've read about in the news who were murdered by their parents. The normal response is outrage, fury. You'll hear people suggest that the murderers should be put in jail, in the general population, where they'll get what's coming to them.

But you won't hear any of that if the child was disabled. You'll hear sympathy for the parents. Their murdering their child is completely understandable. It's okay.

And what kind of message does that give disabled people?

And what message does it give their parents

quote:
To feel sympathy is not to say that what they did was right -- of course it is always wrong to take another life -- but if Alex himself was occasionally violent we are expected to excuse him because he was disabled.

Nope, we're not expected to excuse him. We're expected to provide a higher level of care. We're expected to figure out why he's violent, and either solve the problems or teach the skills so he won't be violent, or we need to provide a safe and secure environment so nobody will get hurt. Or both.

quote:
Where is the line on the scale of impairment that says his mother was not also disabled to some extent? Add low intelligence and probably some depression to poor physical health and chronic sleep deprivation and maybe her cognitive abilities and impulse control were not much better than his.

I don't know why he wasn't at school -- even if he wouldn't have learned anything at school, that would have been respite for his mom.

We know she turned down other services that were offered.

If she wouldn't send him to school, and wouldn't accept other services, if her cognitive abilities and impulse control had become so severely impaired that she couldn't care for him, then maybe he needed to be removed from her custody.

Killing Alex should never have been an option.

Posted by PeteC (# 10422) on :

You said it, Josephine!

Posted by Twilight (# 2832) on :

quote:
Originally posted by Josephine:

quote:
Originally posted by Twilight:
One of the articles linked in the Hell thread decries our tendency to feel sympathy for the parents who do things like this -- but why shouldn't we?

The issue, I think, is that people are not sympathetic towards parents that are accused of killing their children -- think of JonBenet Ramsey or Caylee Anthony or any of the other children you've read about in the news who were murdered by their parents. The normal response is outrage, fury. You'll hear people suggest that the murderers should be put in jail, in the general population, where they'll get what's coming to them.

But you won't hear any of that if the child was disabled. You'll hear sympathy for the parents. Their murdering their child is completely understandable. It's okay.

And what kind of message does that give disabled people?

I can't speak for the irate populace who wants to tear people apart. I had sympathy for Andrea Yates who killed her healthy children and I never thought Jon Benet's parents were guilty.

In Alex's case he was not able to read papers and I doubt if his mother was influenced by what she thought public opinion would be if she was planning to kill herself at the same time.

quote:
To feel sympathy is not to say that what they did was right -- of course it is always wrong to take another life -- but if Alex himself was occasionally violent we are expected to excuse him because he was disabled.

quote:
Nope, we're not expected to excuse him. We're expected to provide a higher level of care. We're expected to figure out why he's violent, and either solve the problems or teach the skills so he won't be violent, or we need to provide a safe and secure environment so nobody will get hurt. Or both.

But we, as a population do make excuses for violent people who are mentally disturbed. That's why we have the "insanity," plea and death penalty states don't often carry out the penalty if there is an indication of mental disablement.

If we are "expected to provide a higher level of care" why haven't we done that?

I don't know why Alex's mother wasn't using all the help available to her, that's one reason I've suggested she has low intelligence herself, but I know many, many caregiver parents who have 100% of the care of their mentally ill adult child on themselves 24 hours a day, 365 days a year.

It would be wonderful if every disabled person had all the care they needed, free medical care, safe homes or institutions to live in if parental care wasn't available or up to standard. It would be fantastic if the caregivers had daily help and entire days off to rest. It would be nothing less than a miracle if all such severely ill people as Alex could be "taught skills so he wouldn't be violent." But it's not fair to these parents to pretend that all those options are in place when they are not.

quote:

Maybe he needed to be removed from her custody.

That's obvious now, but unless Alex himself was deemed a danger to himself or others or his mother was reported as negligent, that probably wasn't going to happen.

quote:
Killing Alex should never have been an option.

I agree and said as much but adding his mother to the long list of people society wants to hang doesn't do a thing to help future disabled people. What went on in that household is a nightmare too horrific to think about. But I don't agree that deaths like this send a message that it's okay to kill disabled people. I think it makes most of us more aware of the desperate need for more help for the disabled and their caregivers.

Posted by Haydee (# 14734) on :

What struck me was the level of violence involved - the more usual discourse of 'carer' parent is of smothering, overdosing etc

But it is well known that living with violence over a period of time distorts your thinking. Also that women who are victims of domestic violence do not necessarily react in a way that directly confronts the person who attacks them, but may respond with violence - and have been more severely punished by the courts who have taken the approach that they 'should just have left' without understanding the way trauma influences thoughts and behaviour.

I am involved in a support network of parents of adoptive children, some of who show extreme violence because of past traumas. It is very difficult for the parents to get recognition that they are experiencing domestic violence because it is their 'children' (who may be bigger and stronger) who are the perpetrators. Just as used to be the case with partner violence, they are often expected 'not to provoke' the violence against them.

I have no idea whether that was the case here. But if the women involved had experienced violence from Alex - not to say that it was his 'fault' for the violence - then they may have experienced him as an immediate threat in a way that we wouldn't looking rationally at the situation.

Posted by ken (# 2460) on :

If we can believe the reports on those web pages (and I have no idea if we can) the murderers are quite clearly mentally ill themselves. They killed the cat. They tried to kill themselves. I mean, seriously, they killed the bloody cat. That is just weird.

It doesn't look like the mother hit some wall of despair or incapacity and just couldn't cope any more, which might be more understandable. This was planned for weeks. They co-operated on it. They must have discussed it, agreed on it. Also - again if the reports are true, it sounds so weird its hard to believe - they did have some 3rd-party care, there was some chance at at least temporary respite through the hospital, and they rejected it.

It sounds more like one of those solipsistic suicides, where the suicide kills themself and their children or other family members, sometimes after some apparently trivial setback. There are men who have lost their jobs and killed all their kids and the dog and themselves on the same day.

There's an old cliche that a murderer merely kills one victim but a suicide tries to kill the world. It seems almost true in that kind of case. Its as if they don't really think that the other people they kill have a separate existence from themselves, as if they are part of them, their property, or even just an aspect of their own mind. So once they are gone there will be no reason for anyone else to live on afterwards. What would be the point?

So maybe if one of the adults had come to see the child - or all other humans - as little more than an extension of their own self, rather than a person in his own right then it made sense to them to get rid of him when they staged their own exit.

That's what this sounds like. If, that is, the websites are telling the truth.

If it was like that I'd not be at all surprised if it turned out that one of the adults had basically taken control over the other's life and more or less forced them to join in. So we might see one breaking free of the other now they are in custody.

I'm not even sure I'd blame Andrew Wakefield for the death. OK he is an evil shit, a liar, a cheat, and a knowing accessory to the deaths of quite a few innocent victims of his anti-vaccination snake-oil scam. But he's not, I think, a deliberate mass-murderer, more a rather amoral quack who doesn't much care what happens to the people who pay for his patent cures after he's pocketed the money. And in this case he had the bad luck to bump into a solipsistic suicide coming on to the boil. Maybe here he was just an extra in someone else's grand final exit performance.

If, that is, the reports are accurate.

I mean, they killed the cat. Killing your son is horrific and evil. Killing the cat as well is sick and weird.

(Or almost worse, what if the suicide pact was a fake, they deliberately didn't take enough pills to kill themselves, and the bloody method they chose for the murder, and the killing of the cat were to make them look mad as a way of getting off the murder charge - maybe that is going too far down the conspiracy theory hole)

Posted by Josephine (# 3899) on :

quote:
Originally posted by Twilight:
If we are "expected to provide a higher level of care" why haven't we done that?

I think it's because society as a whole -- not us as individuals, but us in the aggregate -- have decided that disabled people aren't worth spending money on.

quote:
It would be wonderful if every disabled person had all the care they needed, free medical care, safe homes or institutions to live in if parental care wasn't available or up to standard. It would be fantastic if the caregivers had daily help and entire days off to rest. It would be nothing less than a miracle if all such severely ill people as Alex could be "taught skills so he wouldn't be violent." But it's not fair to these parents to pretend that all those options are in place when they are not.

See, I don't think it would take a miracle to provide appropriate care for people like Alex. It doesn't require God to do that -- it's our task, as Christians, as human beings, to do it. And we know how to do it. It doesn't even require scientific breakthroughs that haven't already been made. We just have to do it.

And until we do it, until we provide adequate care for people like Alex, there will be more disabled children murdered by parents. Alex Spourdalakis wasn't the first, and unless things change drastically, he won't be the last.

So we need to make sure people know about the options that ARE available. There aren't enough, many of them aren't adequate, the waiting lists for some of them are very, very long, but they exist.

I think we also need to make it clear that murder is not an acceptable alternative. When people talk about how the child is better off now that they're dead, when they talk about how hard the child was to care for, and how awful life was for the parents, the unthinkable begins to become thinkable.

And we do need to ensure that there is free medical care available for people with disabilities, that there are safe homes or institutions for them to live in if parental care isn't available or up to standard. We need to ensure that there are people available with the skills and resources necessary to teach kids like Alex how to communicate their needs without violence, and to teach their parents how to recognize and solve the problems that drive the unacceptable behaviors. We need to provide daily help for the caregivers, and we need to provide respite care for them.

So how are we going to do that?

Posted by Jade Constable (# 17175) on :

I think the pertinent question is whether or not there are people who are better off dead. Note that I am not saying that there are! Just that this is the relevant question in these cases.

Posted by Josephine (# 3899) on :

quote:
Originally posted by Jade Constable:
I think the pertinent question is whether or not there are people who are better off dead. Note that I am not saying that there are! Just that this is the relevant question in these cases.

Relevant to what?

Posted by Porridge (# 15405) on :

And who is to decide who's better off dead?

On the Hell thread, I suggested that we work, and have for generations worked, very hard at the wrong problem.

Our general approach to people with disabilities has been this:

1. Try to make the affected person more like "normal" (so-called) people, through therapies, behavior mod, medication, education, training, etc.

2. If/when this fails (or more usually, fails to work fast enough for "normal" or falls short of "normals'" expectations in some other way), segregate the affected person from the rest of society by incarcerating them (or at least excluding them from much of "normal" life for the crime of being different.

Why is this our approach? Simples: we're primates. Primates typically live in social groups -- troups if you're a baboon or chimp, "societies" and “communities” if you're human. We're a social species. In the wild, where primate hindbrains reign, primates typically exclude (banish, violently drive off, and even kill) troup, er, community members whose differences are extreme enough to pose a survival threat to the group itself. Think "Gramps can't get around any more, and will slow us down when we need to escape from hungry wolves, so we'll put him out on an ice floe" or "Kiku's uncontrolled screeching scares away potential mates / prey, and attracts the attention of possible predators; and the only way we can shut him up is to drive him off with violence or kill him."

Under stress, our hindbrains probably take over most of what we like to call "our thinking." These aren't conscious reactions; as a result, we have very little control over them.

Of course, we also have hindbrain impulses that work in the opposite direction: we reproduce, and the result for primates is an infant which remains pretty helpless for protracted periods of time. Infants, too, slow us down and render the whole troup more vulnerable. Infants, too, screech uncontrollably, driving off mates & prey and attracting predatory attention.

Yet our response to these noisy, messy, uncontrolled creatures is (usually) to protect and cherish them, even to the extent of risking our own (individual) lives. But then, these creatures are our genetic legacy. Kiku, if related to us at all, is a more distant connection. Similarly, Gramps may be a genetic forebear, and we may have depended on him for our own survival in times past. But now he poses a threat to that survival.

It's all about the relative value – the risk/benefit ratio, if you will – the troup member can contribute to the troup. An infant is a potential troup member who we trust to grow into a contributing adult. We expect his helplessness to abate. We expect that eventually his screeching will only be engaged in when screeching is actually called for.

Of course, we're now civilized adult primates, or so we'd like to believe. So instead of beating up or killing our unrelated troup members who we perceive as more risk than benefit, we merely banish them. Here's how:

1. We institutionalize them. Out of sight, "they" don't bother us. We hire designated (and badly-paid) carers to save us the trouble of interpreting strange (or absent) speech patterns, odd ideas, weird/ uncontrolled behaviors, and/or to assist in some way with physical and sensory deficits.

2. When we don't incarcerate the different, we punish them in other ways for their failure to be "normal." We segregate them economically, by requiring them to live in penury on social security benefits (in the U.S. even the monies are segregated into Social Security Disability payments, separate from other benefits). In the event that they are able to produce work (thereby contributing and becoming valuable to the troup), we restrict these contributions by threatening to take away their health insurance – something employers are reluctant to offer, as the costs are seen as prohibitive. We hedge the different around with physical and social barriers which make their lives difficult enough to ensure that they don’t get “loose” among the “normal” troup.

3. We ensure that, for so-called "invisible" "disabilities," we can always tell who's who by setting up systems for their care which are separate from the systems used by “normals” – separate health care, separate education, separate living facilities. We give these systems, and the “experts” who work in them, separate labels.

In short, we’ve identified the problem as “those funny-looking, funny-acting people.” We try to fix this “problem” by making the different look and act less funny. While this may be of benefit (if successful) to the different in some situations, it doesn’t address the real problem. The real problem is this: how do we alter the behavior of “normals” so that they stop ostracizing and penalizing the different?

Case in point: my agency

My job, in theory, is to help adults who have disabilities live on their own in community settings while helping them integrate into those communities by encouraging social connections with “normal” adults, since adults typically form friendships with other adults. Operating on a typical work-week schedule (8-5, M-F), my staff attempt this in a variety of ways. That’s the kicker: Where do you find the vast majority of “normal” community-based adults at these hours on these days? They are attending classes at a local college or trade school, and/or they are working. The only adults not so engaged are retirees (not in my clents’ age cohort) and mothers of young children who tend to avoid our funny-looking, funny-acting clients. After all, they are already dealing with people who need plenty of help and guidance: their kids.

Most of my clients can work only part time (if at all), and most of this work is in what we call “food and filth”: that is, janitorial and food services. For those able to hold down such part-time jobs, they get the least desirable shifts, working away from customers, and often isolated even from co-workers by the nature of their work.

My clients can’t attend college. Even if they could take courses without matriculating (since it’s unlikely they can get admitted), transportation and tuition costs would present insurmountable challenges.

For the last umpty-leven years, I have been pointing out to my superiors that, if we’re sincere in wanting to integrate our clients socially into their communities, we need to offer our services not M-F 8-5, but on weeknights and weekends. That’s when “normal” adults socialize. That’s when bridge clubs meet. That’s when the local chorale practices. That’s when the model railroaders get together. That’s when the cyclist groups hold spin class.

The response? “We offer normal working hours for our staff.” So our entire enterprise is actually being run not for the benefit of our clients (who wander our communities isolated, rejected, and preyed upon), but for the benefit of our staff of “normals.”

We have found the enemy, and he is us.

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by Josephine:

quote:
Originally posted by Jade Constable:
I think the pertinent question is whether or not there are people who are better off dead. Note that I am not saying that there are! Just that this is the relevant question in these cases.
Relevant to what?

Relevant to whether or not euthanasia is acceptable.

Posted by Josephine (# 3899) on :

quote:
Originally posted by Jade Constable:

quote:
Originally posted by Josephine:

quote:
Originally posted by Jade Constable:
I think the pertinent question is whether or not there are people who are better off dead. Note that I am not saying that there are! Just that this is the relevant question in these cases.
Relevant to what?
Relevant to whether or not euthanasia is acceptable.

Tell me how you'd decide that someone else is better off dead.

Posted by Josephine (# 3899) on :

quote:
Originally posted by Jade Constable:

quote:
Originally posted by Josephine:

quote:
Originally posted by Jade Constable:
I think the pertinent question is whether or not there are people who are better off dead. Note that I am not saying that there are! Just that this is the relevant question in these cases.
Relevant to what?
Relevant to whether or not euthanasia is acceptable.

Tell me how you'd decide that someone else is better off dead.

Posted by lilBuddha (# 14333) on :

Euthanasia is a separate discussion from this one.
The use of the knife, multiple stab wounds and nearly severing his hand suggests this was more about the mother than concern for the son.

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by Josephine:

quote:
Originally posted by Jade Constable:

quote:
Originally posted by Josephine:

quote:
Originally posted by Jade Constable:
I think the pertinent question is whether or not there are people who are better off dead. Note that I am not saying that there are! Just that this is the relevant question in these cases.
Relevant to what?
Relevant to whether or not euthanasia is acceptable.
Tell me how you'd decide that someone else is better off dead.

Well I don't know; that's why I'm asking.

Posted by Porridge (# 15405) on :

quote:
Originally posted by Josephine:
Tell me how you'd decide that someone else is better off dead.

I made an appointment with a doc, new in town, for one of my clients. Doc told me flat out that he didn't know what kind of quality of life someone could have who couldn't play golf on his Wednesday afternoons off. (This would include me, btw, as my job generally runs 60 hours a week.)

You have to wonder whether he'd bother to treat a 45-y.o. guy with Down syndrome and a bum ticker for the bum ticker.

No client of mine has been to him since, at least not through my efforts. IME, the medical profession are often The Enemy Who Is Us when it comes to folks with significant disabilities.

Posted by Porridge (# 15405) on :

quote:
Originally posted by Jade Constable:

quote:
Originally posted by Josephine:
Tell me how you'd decide that someone else is better off dead.
Well I don't know; that's why I'm asking.

You don't know how to decide that someone else is better off dead?

How do we decide that someone else should die? That's the "question" you're raising?

There is only one answer to this question: you don't decide. Even if your answer is "This other person should live," you have embarked on a course that places you among the morally deranged.

That is essentially the question Mrs. Skourdelakis asked, and then answered with her homicidal frenzy against her son.

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by Porridge:

quote:
Originally posted by Jade Constable:

quote:
Originally posted by Josephine:
Tell me how you'd decide that someone else is better off dead.
Well I don't know; that's why I'm asking.
You don't know how to decide that someone else is better off dead?

How do we decide that someone else should die? That's the "question" you're raising?

There is only one answer to this question: you don't decide. Even if your answer is "This other person should live," you have embarked on a course that places you among the morally deranged.

That is essentially the question Mrs. Skourdelakis asked, and then answered with her homicidal frenzy against her son.

Um, no, I meant it as a philosophical question - do people exist who are better off dead? Is it ever possible to be in so much pain when alive that being dead is better? I didn't mean that we should find people who are better off dead and kill them.

Posted by Twilight (# 2832) on :

quote:
Originally posted by Twilight:

It would be nothing less than a miracle if all such severely ill people as Alex could be "taught skills so he wouldn't be violent."

quote:
Originally posted by Josephine: See, I don't think it would take a miracle to provide appropriate care for people like Alex. It doesn't require God to do that -- it's our task, as Christians, as human beings, to do it. And we know how to do it.

I do not share your conviction that every mentally ill person can be taught not to be violent, but even if it were possible, being taught those skills is not the same thing as "appropriate care." I've already said that I'm all for that.

----
Like Ken, I wondered about the cat, but I think they may have thought the cat would slowly starve to death after they were gone.

Yes, the women seem very mentally ill to me which brings me back to the question of how we decide just who are to be called "disabled," (and deserving of sympathy) and which ones are considered abled and so not only given no therapy or medical care for their own problems but held responsible for the well being of others.

Posted by Doublethink (# 1984) on :

In the UK, aside from the fact that we do not currently permit euthanasia, the mental capacity act allows decisions to be made in the best interests of a person who lacks capacity to make a specific decision at a specific time. However, it states clearly:

quote:
Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.

I believe this is an important protection for very vulnerable people.

[ 16. June 2013, 18:08: Message edited by: Doublethink ]

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by tessaB:
I know many mothers of disabled children (myself included) who have had what I call 'brick wall' moments. The idea occurs when driving that speeding up and hitting a brick wall would make a lot of problems go away.
And then we realise that we have just thought of our beloved child as a problem, feel rightly ashamed of ourselves and do not do it .
Even with my mainstream child I had times when she was a baby when I had to put her very, very gently in her cot and walk away. Tiredness and frustration can take it out of anyone. That is when you need to ensure the child is somewhere safe (even putting a lock on their bedroom door for emergency use) and leave them alone for ten minutes.
Yes, I can sympathise with the grief, exhaustion and lack of hope. No, I could never see my child as someone who has less right to live than anyone else. I thank God for him every day, he has been a true blessing in my life.

I think this is where I feel unable to empathise either with the mother of Alex or parents of disabled people (despite having disability myself). I do not want children and have never wanted children - I like children well enough in small doses.

Posted by tclune (# 7959) on :

quote:
Originally posted by Josephine:
The issue, I think, is that people are not sympathetic towards parents that are accused of killing their children -- think of JonBenet Ramsey or Caylee Anthony or any of the other children you've read about in the news who were murdered by their parents.

A dear friend of mine, who is as thoughtful and measured as I am the opposite, once said that he never understood how anyone could abuse a child until he had one of his own. ISTM that most of us have felt that way with our children at one point or another. I honestly don't see folks failing to understand violent reaction to their children of any stripe.

OTOH, the reason we need to draw a clear line is precisely because we understand, not because it is unthinkable. So, at least to my mind, there is no metaphysical difference between parents of disabled children and the rest of us -- although I can readily acknowledge the greater stresses that they may face.

--Tom Clune

Posted by Anglican_Brat (# 12349) on :

quote:
Originally posted by tclune:

quote:
Originally posted by Josephine:
The issue, I think, is that people are not sympathetic towards parents that are accused of killing their children -- think of JonBenet Ramsey or Caylee Anthony or any of the other children you've read about in the news who were murdered by their parents.
A dear friend of mine, who is as thoughtful and measured as I am the opposite, once said that he never understood how anyone could abuse a child until he had one of his own. ISTM that most of us have felt that way with our children at one point or another. I honestly don't see folks failing to understand violent reaction to their children of any stripe.

OTOH, the reason we need to draw a clear line is precisely because we understand, not because it is unthinkable. So, at least to my mind, there is no metaphysical difference between parents of disabled children and the rest of us -- although I can readily acknowledge the greater stresses that they may face.

--Tom Clune

I don't know about this. Yes, I know there are parents who say flippantly, when they are having troublesome kids, "I'm going to kill that kid of mine." However, most people really don't mean what they are saying. Most parents do not want their children, dead. They say the worst thing on earth is to outlive your children.

I don't think it is simple to say that this person killed her child because she was majorly stressed. The other fact is the asymmetrical nature of the parent - child relationship. No matter how much a child is uncooperative or disruptive, the parent is always, the one with the power over the child. This is similar whenever teachers or other adult authority figures get caught sleeping with teenagers underage. Some of them will say, "well, the teenager seduced me." Doesn't matter, as the adult in the relationship, the adult has the superior power, so he or she bears the greater onus of responsibility.

Posted by comet (# 10353) on :

I have a friend who for many years had as her full time job the care of two very disabled children. She was their foster mother. She's an RN - but she stayed home and cared for them 24/7. They required a lot of care; she even had her house built to the specifications needed to care for them - not just ramps but special baths and hoists and things (the one boy grew BIG - I had to help her on a few occasions getting him moved around. he was over 6 feet tall!)

Both of these children were voluntarily released into foster care by their mothers because the mothers knew they didn't have it in them to care for their children. Both the mothers visited their children frequently - one daily, the other weekly. And they were able to have input on where and with whom their children went - this was done out of kindness and it was the best option for those children.

I think one of the issues here is parents who don't feel they have that choice - either because they are unaware or because they are afraid of the shame of "giving up" their children. We need to fix this. we need to encourage parents to do their best, but if they can't hack it, to get help (if it's available: and if not, we need to fix that ASAP) and not be ashamed of getting help.

Thing is, my friend is a nurse and caring for these two children was not only a full time job, but she often called in help. She didn't sleep through the night in over 20 years. a parent who doesn't have either the educational background or the support system is going to struggle no matter what.

As Tom says, even those of us parenting normally-able children struggle. parenting ain't for sissies. It's very important to let new parents know that there is help, beyond La Leche League (bless them), to support us as we struggle through. And that it's not a failure to ask for help. And this is even more important when the child is high maintenance.

Posted by Porridge (# 15405) on :

quote:
Originally posted by Jade Constable:
Um, no, I meant it as a philosophical question - do people exist who are better off dead? Is it ever possible to be in so much pain when alive that being dead is better? I didn't mean that we should find people who are better off dead and kill them.

Oh, well, whew, only a philosophical question. And I am happy to hear that, in your view, hunting down those who are better of dead (in whose opinion, please?)and killing them is not on.

But do you really not understand that "philosophical" questions have real-life moral consequences?

Thousands of people have been sterilized, for example, without their knowledge or consent because others determined that they should not be allowed to reproduce (inferior genes, you know).

Millions of people have died -- in Armenia, in Rwanda, in the-place-we-shall-not-name-due-to-Godwin's-Law -- because someone raised questions about their fitness to participate in society, their "true" motives and goals, their religious/social/political identities, the amount of pain, expressed or unexpressed, that someone might be in, and on and on.

The very question, philosophical or otherwise, assumes that one human (or set of humans) might have the right to determine the fate of some other human (or set of humans).

When we raise questions like these, we create an opening for various possible answers. And, benighted primates that we are, somebody somewhere always has a candidate to propose for filling that opening. There's always some group who someone else is ready to claim isn't fit to participate in society, should be exterminated, mustbe raped or sterilized, has to be put out of their misery, and on and on.

There is no human right to determine someone else's fate (sorry, but the death penalty is immoral). Therefore, there is no legitimate question we can raise which asks how we might manage this non-existent dilemma.

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by Porridge:

quote:
Originally posted by Jade Constable:
Um, no, I meant it as a philosophical question - do people exist who are better off dead? Is it ever possible to be in so much pain when alive that being dead is better? I didn't mean that we should find people who are better off dead and kill them.
Oh, well, whew, only a philosophical question. And I am happy to hear that, in your view, hunting down those who are better of dead (in whose opinion, please?)and killing them is not on.

But do you really not understand that "philosophical" questions have real-life moral consequences?

Thousands of people have been sterilized, for example, without their knowledge or consent because others determined that they should not be allowed to reproduce (inferior genes, you know).

Millions of people have died -- in Armenia, in Rwanda, in the-place-we-shall-not-name-due-to-Godwin's-Law -- because someone raised questions about their fitness to participate in society, their "true" motives and goals, their religious/social/political identities, the amount of pain, expressed or unexpressed, that someone might be in, and on and on.

The very question, philosophical or otherwise, assumes that one human (or set of humans) might have the right to determine the fate of some other human (or set of humans).

When we raise questions like these, we create an opening for various possible answers. And, benighted primates that we are, somebody somewhere always has a candidate to propose for filling that opening. There's always some group who someone else is ready to claim isn't fit to participate in society, should be exterminated, mustbe raped or sterilized, has to be put out of their misery, and on and on.

There is no human right to determine someone else's fate (sorry, but the death penalty is immoral). Therefore, there is no legitimate question we can raise which asks how we might manage this non-existent dilemma.

I can see all of that. But coming from my perspective, as someone whose life has sometimes been so painful that suicide has seemed like a reasonable option for me, there have been times where death genuinely seemed preferable. But are you saying that suicide is also immoral?

(I am totally opposed to the death penalty, fwiw.)

Posted by Porridge (# 15405) on :

quote:
Originally posted by Jade Constable:
I can see all of that. But coming from my perspective, as someone whose life has sometimes been so painful that suicide has seemed like a reasonable option for me, there have been times where death genuinely seemed preferable. But are you saying that suicide is also immoral?

(I am totally opposed to the death penalty, fwiw.)

*Sigh*

Do you honestly perceive no difference between you deciding for yourself that your life is not worth living (I note you are still with us [Biased]

), and someone else, perhaps someone who barely knows you, deciding that your life is not worth living and administering a deliberate overdose of morphine to end it?

[ 16. June 2013, 19:38: Message edited by: Porridge ]

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by Porridge:

quote:
Originally posted by Jade Constable:
I can see all of that. But coming from my perspective, as someone whose life has sometimes been so painful that suicide has seemed like a reasonable option for me, there have been times where death genuinely seemed preferable. But are you saying that suicide is also immoral?

(I am totally opposed to the death penalty, fwiw.)
*Sigh*

Do you honestly perceive no difference between you deciding for yourself that your life is not worth living (I note you are still with us , and someone else, perhaps someone who barely knows you, deciding that your life is not worth living and administering a deliberate overdose of morphine to end it?

Of course there is a difference. But what about for people that know the individual very well, who know that the person would commit suicide if they could? I would never support it myself but I could see how people can get there.

Posted by Zoey (# 11152) on :

quote:

Originally posted by Jade Constable:
I can see all of that. But coming from my perspective, as someone whose life has sometimes been so painful that suicide has seemed like a reasonable option for me, there have been times where death genuinely seemed preferable. But are you saying that suicide is also immoral?

(I am totally opposed to the death penalty, fwiw.)

For goodness' sake.

Suicide and murder are utterly different acts.

My personal opinion (which I know others do not necessarily share) is that suicide should be available as a choice which an individual can make for him- or herself, even though it may have negative consequences for people around him or her. (My one qualification to this is that people with dependent children should not make this choice - but the detailed nuances of my views about suicide are tangential to the thread.)

Nobody gets to decide that another person, anybody other than themselves, is "better off dead". That is in Porridge's very apt term "morally deranged".

Suicide is no longer a criminal offence in the UK and opinions about whether killing onesself is immoral tend to range from 'no' through to 'rarely, but most suicides are the result of mental-ill-health and therefore the deceased cannot be considered fully culpable'. Murder is illegal, immoral and wrong - whoever the victim is and whatever 'philosophizing' you wish to undertake regarding the victim's quality of life.

X-post

[ 16. June 2013, 19:44: Message edited by: Zoey ]

Posted by tclune (# 7959) on :

quote:
Originally posted by Anglican_Brat:
I don't know about this. Yes, I know there are parents who say flippantly, when they are having troublesome kids, "I'm going to kill that kid of mine." However, most people really don't mean what they are saying.

As a response to my post, this is stunningly lacking in insight. Honest question -- are you a parent?

--Tom Clune

Posted by mousethief (# 953) on :

quote:
Originally posted by tclune:

quote:
Originally posted by Anglican_Brat:
I don't know about this. Yes, I know there are parents who say flippantly, when they are having troublesome kids, "I'm going to kill that kid of mine." However, most people really don't mean what they are saying.
As a response to my post, this is stunningly lacking in insight. Honest question -- are you a parent?

--Tom Clune

By calling this "lacking in insight" are you claiming that parents never say this, or that most people who say it DO mean what they're saying?

Posted by tclune (# 7959) on :

quote:
Originally posted by mousethief:

quote:
Originally posted by tclune:

quote:
Originally posted by Anglican_Brat:
I don't know about this. Yes, I know there are parents who say flippantly, when they are having troublesome kids, "I'm going to kill that kid of mine." However, most people really don't mean what they are saying.
As a response to my post, this is stunningly lacking in insight. Honest question -- are you a parent?

--Tom Clune
By calling this "lacking in insight" are you claiming that parents never say this, or that most people who say it DO mean what they're saying?

Neither. My post, to which this was given as a response, did not use that phrase at all. The response was a caricature, probably unintentionally, of the point I was making.

--Tom Clune

Posted by Porridge (# 15405) on :

quote:
Originally posted by Jade Constable:
But what about for people that know the individual very well, who know that the person would commit suicide if they could? I would never support it myself but I could see how people can get there.

When I was younger and foolisher ( [Ultra confused]

), I married a man much older than me whom I divorced three years later. For assorted reasons not relevant here, I maintained a connection to this man. I knew him very well; I could predict with great accuracy what he'd do or say in response to any given situation. I could not, however, live peaceably with him.

In his last three years of life he frequently expressed the wish to die. He complained of no great physical discomfort, but he was deeply depressed, unable to work, and his life situation was very lonely.

I suppose I could have secured a gun and shot him, put a pillow over his face, or otherwise done in him on one of my visits, in accord with his wishes.

I didn't. First, there was always the possibility that a new anti-depressant might ameliorate his depression. Second, there are laws in my state against murder (which is what such actions would have been), and this is a death-penalty state.

Please tell me why I should place the rest of my own life at risk (to say nothing of the mess this would make for other people who care for and depend on me) in order to carry out his wishes to have his existence terminated when he was clearly unwilling (though perfectly able) to carry out such wishes on his own? In short, if he wasn't willing to end his own life (and since he could but didn't, we can safely conclude that he chose not to), why should I do so, and take the punishment for it?

He died, of natural causes (or passive-aggressiveness, take your pick), a little over a year ago.

(RIP, D.)

Posted by lilBuddha (# 14333) on :

quote:
Originally posted by Jade Constable:
But what about for people that know the individual very well, who know that the person would commit suicide if they could?

But you cannot know. Our perceptions of others are coloured, regardless of our best possible efforts.
Even could you read their immediate thoughts, outlook can change.

Posted by Josephine (# 3899) on :

For the sake of discussion, let's all just assume that Alex was not better off dead, okay? Let's assume that, at some level, his life was, or would be, worth living.

Given that, what needs to be done to reduce the risk of another autistic child being murdered by his or her parents?

Because this has happened before. And it will happen again if nothing changes.

So what needs to change? What can we do to make the necessary change happen?

Posted by Haydee (# 14734) on :

quote:
Originally posted by Josephine:
For the sake of discussion, let's all just assume that Alex was not better off dead, okay? Let's assume that, at some level, his life was, or would be, worth living.

Given that, what needs to be done to reduce the risk of another autistic child being murdered by his or her parents?

Because this has happened before. And it will happen again if nothing changes.

So what needs to change? What can we do to make the necessary change happen?

Make it politically acceptable to raise taxes.

Have a well-funded system of health visitors who are backed up by an inter-disciplinary team able to support families with a range of difficulties. Make that a routine support system for all families from birth. Give the case workers small enough case loads to follow up and genuinely keep in touch with their clients.

Provide good schooling with remedial help for children with all types of need. Have that fully integrated into interdisciplinary teams (see above).

In the early years offer good quality child care/pre-schools that are affordable (perhaps means tested?) with a priority for families where a child (or parent) has special needs. Make sure the staff are well trained in child development, whatever additional needs the children in their care have, and an awareness of family dynamics and child protection. Pay them for the level of training and skill they need.

Offer respite care, and whatever other interventions are needed.

Make sure that there is a 'growing up' plan for children with special needs that identifies early (in outline, then in more detail as it gets closer) the point at which the child may need non-family care, and monitor the situation with that plan in mind.

Etc etc

I'm sure others involved in social services will be able to offer suggestions.

But I can't see any politician getting elected on that platform.

Posted by Golden Key (# 1468) on :

Re Haydee's suggestions:

In the US, that would bring about cries of "Socialism! Big government! Nanny state! What about personal responsibility? No one's going to tell me what to do with MY kids!!!", etc. Never mind how the gov't visitors might be greeted at doors...
[Eek!]

I'm pretty liberal and am for strong social services and safety nets and schools and health care. But I find Haydee's suggestions, taken as a whole, somewhat daunting.

Posted by Josephine (# 3899) on :

quote:
Originally posted by Golden Key:
I'm pretty liberal and am for strong social services and safety nets and schools and health care. But I find Haydee's suggestions, taken as a whole, somewhat daunting.

But a very, very minimalist version of everything on Haydee's list already exists. Even the health visitors -- although those programs may have been axed completely with the austerity programs of late, just a few years ago, public health nurses would come by your home (or arrange to meet you somewhere else) to give you your medication if you had multiple-drug-resistant TB or, in certain cases, severe mental illness.

None of it is breaking new ground. The programs Haydee describes would simply have to be funded, then scaled up to meet the real need for them.

What makes you uncomfortable about it?

And what would you do instead?

Posted by Jane R (# 331) on :

Jade:

quote:
But what about for people that know the individual very well, who know that the person would commit suicide if they could?

I think this is a very dangerous assumption to make. I don't feel I know anyone that well, and if I were called on to help someone commit suicide I would not want to do it.

If you know someone that well, there is also quite a high probability that their death will help you in some way - materially, if you inherit their estate, but also if you are their carer by relieving you of the burden of caring for them. And it is a burden, however much you may love them. You may say you're acting in their best interests; you may even believe it yourself; but how much have you been influenced by considerations of what it will mean in your life?

Posted by Haydee (# 14734) on :

quote:
Originally posted by Golden Key:
Re Haydee's suggestions:

In the US, that would bring about cries of "Socialism! Big government! Nanny state! What about personal responsibility? No one's going to tell me what to do with MY kids!!!", etc. Never mind how the gov't visitors might be greeted at doors...

I'm pretty liberal and am for strong social services and safety nets and schools and health care. But I find Haydee's suggestions, taken as a whole, somewhat daunting.

Exactly...

Though they have been pretty standard, in principle and outline, in western Europe/Scandanavia.

Posted by Marvin the Martian (# 4360) on :

quote:
Originally posted by comet:
I think one of the issues here is parents who don't feel they have that choice - either because they are unaware or because they are afraid of the shame of "giving up" their children.

If the people in this case were willing to kill their cat to "save it" from having to go into a shelter, I think it's safe to say they never had any intention of letting their son go into care.

Posted by tessaB (# 8533) on :

Haydee's suggestions are exactly what is supposed to happen in the UK.
When a child is diagnosed with a developmental disorder the health visitor is informed. The health visitor in theory then visits to see if the family want social services support (you need a social worker to access respite care etc). The social worker should then visit at least twice a year to make sure that nothing has changed and the package of support is adequate.
Before the child turns 18 their case is passed over to the transition team which liaised with both child services and adult services to ensure that any college/home situation is appropriate.
We had a fantastic social worker who ensured we had occasional respite, helped us get our son into a specialist boarding school and then handed over to transations with recommendation that our son needed a fully staffed group home situation.
He is now in a home with 5 other autistic adults, high levels of staffing, including 2 waking night staff, and he is very happy and settled. He comes home regularly for weekends or longer and because we are rested and relaxed we have a lovely time.
Of course if you refuse any help things can go badly wrong.

Posted by Jane R (# 331) on :

@ TessaB: Except for the bit about raising taxes being politically acceptable. They all do it, of course, but they like to pretend they don't...

Also, we haven't yet achieved Nirvana; the NHS, social workers, the police and the staff in schools are all overworked and the availability of these services is patchy. But we're trying.

And when it works (I'm really glad to hear it worked for you, TessaB) it's fantastic.

Posted by Porridge (# 15405) on :

Can't speak to the state of things in the UK, but here in the U.S., things work (when they do) when parents

(A) have the acuity and persistence to scope out what systems are involved and how these work

(B) have at least one adult with enough time to closely monitor interactions between the system and their affected family member

(C) have an extended (non-system-based) support system to provide them with advice, sounding boards, and moral support when things get tough.

The sad reality is that these are generally "professional-class" families. Heaven help the affected person who has had the poor judgment to get him- or herself born into a family with little education, money, support, or leisure. I strongly suspect that Alex might have belonged to a family in which one or more of the latter situations prevailed.

Posted by Golden Key (# 1468) on :

Something I've been wondering: might the women have thought Alex was possessed or cursed?? When worried about that, people can do awful things.

The couple of articles I read had no info about the women. Looking at their last names, I'm guessing that the mom is Greek and the godmother Eastern European. Could they be mired in dangerous kinds of folklore?

Back in the '80s, I think, there was a news story, here in N.Calif., about a family who moved here to escape that sort of thing. I think they were from Greece. They had a little girl who was born with a hemangioma on her face--kind of like a strawberry birthmark, but it was more widespread, covering much of her face. People where they had lived were afraid of the girl, thought she was evil, etc. IIRC, the situation was getting dangerous. So the parents and little girl got out of there, and eventually made their way here. I think they were able to get treatment for their girl.

I once worked with a young Asian woman who seriously thought that you could get an infection by looking at someone else's infection.

Just wondering if such factors might have been involved.

Posted by Erroneous Monk (# 10858) on :

quote:
Originally posted by Jade Constable:

quote:
Originally posted by Porridge:

quote:
Originally posted by Jade Constable:
I can see all of that. But coming from my perspective, as someone whose life has sometimes been so painful that suicide has seemed like a reasonable option for me, there have been times where death genuinely seemed preferable. But are you saying that suicide is also immoral?

(I am totally opposed to the death penalty, fwiw.)
*Sigh*

Do you honestly perceive no difference between you deciding for yourself that your life is not worth living (I note you are still with us , and someone else, perhaps someone who barely knows you, deciding that your life is not worth living and administering a deliberate overdose of morphine to end it?
Of course there is a difference. But what about for people that know the individual very well, who know that the person would commit suicide if they could? I would never support it myself but I could see how people can get there.

When I tell someone close to me that my life is unbearably painful and, therefore, I would wish to die, they don't start planning ways to make it happen - they talk me out of it; they may even take action to ensure I'm safe.

Why should anyone react differently to a person with physical disabilities saying that they would wish to die? Except for the sad fact that we live in a world which seems to readily accept that the life of a physically disabled person is worth less than that of an "able-bodied" one. [Frown]

Posted by Porridge (# 15405) on :

quote:
Originally posted by Erroneous Monk:
Why should anyone react differently to a person with physical disabilities saying that they would wish to die? Except for the sad fact that we live in a world which seems to readily accept that the life of a physically disabled person is worth less than that of an "able-bodied" one.

For that matter, what is a disability? I wear glasses for nearsightedness, and wouldn't be safe crossing the street without mine.

I also wear hearing aids. With them, I manage pretty well. Without them, fuhgeddaboudit.

Nobody would take me seriously if I claimed I was disabled on the basis of my nearsightedness. But my agency can, with a clear conscience, tick me off on their "we hire the disabled" box because of my hearing impairment whether I'm wearing wearing my aids or not.

How about a colleague of mine at another agency? He has muscular dystrophy. He lives on his own, drives himself to work, puts in a full work week, pulls down a reasonable salary, manages his life, went on vacation to Hawaii last summer, and is getting married at the end of this month. Does he sound disabled to you? Probably not, until you hear he uses a wheelchair.

One answer to Josephine's question about "What do we do?" has got to start here: what on earth do we actually mean by "disabled?"

Posted by Fool on the hill (# 9428) on :

I would have to agree with ken completely. This horror story is most definitely more indicative of the lack of resources, or identification, for adults with mental illness than it is of the lack of resources for the autistic. The mother and caregiver seem to me to be mentally ill.

[Frown]

Posted by RuthW (# 13) on :

quote:
Originally posted by Porridge:
One answer to Josephine's question about "What do we do?" has got to start here: what on earth do we actually mean by "disabled?"

I think we need to back up even further and discuss what is due to all people simply because they're human beings.

Posted by Golden Key (# 1468) on :

quote:
Originally posted by Josephine:

quote:
Originally posted by Golden Key:
I'm pretty liberal and am for strong social services and safety nets and schools and health care. But I find Haydee's suggestions, taken as a whole, somewhat daunting.
But a very, very minimalist version of everything on Haydee's list already exists. Even the health visitors -- although those programs may have been axed completely with the austerity programs of late, just a few years ago, public health nurses would come by your home (or arrange to meet you somewhere else) to give you your medication if you had multiple-drug-resistant TB or, in certain cases, severe mental illness.

None of it is breaking new ground. The programs Haydee describes would simply have to be funded, then scaled up to meet the real need for them.

What makes you uncomfortable about it?

And what would you do instead?

Posted by Josephine (# 3899) on :

quote:
Originally posted by RuthW:

quote:
Originally posted by Porridge:
One answer to Josephine's question about "What do we do?" has got to start here: what on earth do we actually mean by "disabled?"
I think we need to back up even further and discuss what is due to all people simply because they're human beings.

I think that's an excellent place to start.

What is due to all people, simply because they're human beings? What was due to Alex Spourdalakis? What was due to his mother and his godmother? I'm using their names because this thread is about Alex. You can add other names and situations if you wish, to illustrate your thoughts.

Thank you.

Posted by Golden Key (# 1468) on :

quote:
Originally posted by Josephine:

quote:
Originally posted by Golden Key:
I'm pretty liberal and am for strong social services and safety nets and schools and health care. But I find Haydee's suggestions, taken as a whole, somewhat daunting.
But a very, very minimalist version of everything on Haydee's list already exists. Even the health visitors -- although those programs may have been axed completely with the austerity programs of late, just a few years ago, public health nurses would come by your home (or arrange to meet you somewhere else) to give you your medication if you had multiple-drug-resistant TB or, in certain cases, severe mental illness.

None of it is breaking new ground. The programs Haydee describes would simply have to be funded, then scaled up to meet the real need for them.

What makes you uncomfortable about it?

And what would you do instead?

My initial reading of Haydee's "Make that a routine support system for all families from birth" was that she really meant *all* families, not just those with someone who has special needs. And while that could be very good in some ways, it set off my "Warning, Will Robinson! Danger! Government intrusion!" alarms. Now, imagine how folks who aren't liberal would react. Hence my comment about health visitors possibly being in danger at the door.

I haven't heard of public health nurses doing what you mentioned. We could certainly use that in California. When people were released en masse into the community from long-term psych commitment, it was supposed to be better for them. But they had to go somewhere to get their meds. Without supervision, many didn't make it, so wound up off their meds. And many wound up living on the streets. That's been the case since at least the '90s.

Yes, programs would "simply have to be funded". But how often does that work? On a long-term basis? *Schools* don't get anywhere the money they need--and if a good program (of any kind) gets started, it's sure to get cut at some point. And probably never restored. School music programs come to mind.

We have many thousands more homeless people in San Francisco than there are shelter beds. And that was the case before the Dot-Com crash, which made many people homeless. And that was before the recent recession/depression. Local gov't goes back and forth about solutions. It often means cops getting them out of site of tourists. And not only clearing out encampments, but confiscating and destroying everyone's belongings. A previous mayor (Gavin Newsom--don't vote for him if he seeks higher office) came up with the lauded Care, Not Cash program. It consisted of taking all of a homeless person's benefits, except for $59/mo., and using that to pay for services. Except there weren't enough physical and financial resources...so they'd use money from one homeless person to help another...and not help the first person. So many people wound up worse off. There are still homeless people sleeping in doorways in my block.

Private organizations, like Glide church (which has great programs) and food banks, are low on resources. The bad economy has meant fewer donations.

The government, as a system, really isn't interested in helping people. Witness how hard you have to fight to get on Social Security Disability (SSDI), even if you're visibly disabled and have tons of documentation from doctors. Most people are turned down, and have to keep fighting--and even a fully-functioning person would have a hard time doing that.

I don't have any easy fixes. Yes! magazine, which focuses on "positive futures" has good ideas for all sorts of societal changes. I recently saw a public television show about efforts in the little country of Bhutan to get community programs going for people with disabilities. They showed one young woman with developmental (?) disabilities who'd pretty much been sitting in a corner for about 20 years. She wouldn't go outdoors. Her parents thought that was the only possible life for her. But a woman talked with them about the new care center (non-residential, I think), and they and the girl finally tried it. (I don't know what happened from there.)

I just think it's...naive?...to think that we can easily get programs accepted, get the money, get people to the programs they need, and keep the programs going.

Heck, the gov't can't even keep track of foster kids. In the case of Florida, IIRC, sometimes kids aren't checked on *at all* for years. When someone finally does, the kids have disappeared. Without any leads.

What happened to Alex was horrific. Giving him and his family intense support might have prevented it.

But I'm not holding my breath that The System will get its act together any time soon, and stay that way.

Posted by Golden Key (# 1468) on :

quote:
Originally posted by Haydee:

quote:
Originally posted by Golden Key:
Re Haydee's suggestions:

In the US, that would bring about cries of "Socialism! Big government! Nanny state! What about personal responsibility? No one's going to tell me what to do with MY kids!!!", etc. Never mind how the gov't visitors might be greeted at doors...

I'm pretty liberal and am for strong social services and safety nets and schools and health care. But I find Haydee's suggestions, taken as a whole, somewhat daunting.
Exactly...

Though they have been pretty standard, in principle and outline, in western Europe/Scandanavia.

Yes, but that runs head-on into the whole American Exceptionalism and Greatest Nation On Earth stuff. I really, really wish we'd get past that. But it gets votes.

And then there's the whole socialism thing. One reason people have been so against proposals of universal health coverage is that it's "socialized medicine". The Cold War casts a long shadow.

Posted by Avila (# 15541) on :

quote:
Originally posted by Porridge:
For that matter, what is a disability? I wear glasses for nearsightedness, and wouldn't be safe crossing the street without mine.

I also wear hearing aids. With them, I manage pretty well. Without them, fuhgeddaboudit.

Nobody would take me seriously if I claimed I was disabled on the basis of my nearsightedness. But my agency can, with a clear conscience, tick me off on their "we hire the disabled" box because of my hearing impairment whether I'm wearing wearing my aids or not.

How about a colleague of mine at another agency? He has muscular dystrophy. He lives on his own, drives himself to work, puts in a full work week, pulls down a reasonable salary, manages his life, went on vacation to Hawaii last summer, and is getting married at the end of this month. Does he sound disabled to you? Probably not, until you hear he uses a wheelchair.

One answer to Josephine's question about "What do we do?" has got to start here: what on earth do we actually mean by "disabled?"

There is a growing debate about the distinction between medical and social models of disability.

The man you refer to has a medical impairment that means he can't walk unaided so uses a chair. However with that provision, and presumably good level access options in the workplace enables him to live fully.

The theory is that medical conditions impair people but society disables. How we build (and built in the past generations) our environment is what prevents eg a wheelchair user from doing their own shopping, getting around the community etc.

Physical adaptations are only part of the issue - attitudes and reactions to those who are different are also disabling, prejudging what people can and can't do, excluding people etc.

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