Thread: Memory eternal, Alex Spourdalakis Board: Oblivion / Ship of Fools.
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Posted by Josephine (# 3899) on
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Alex Spourdalakis was murdered last week. He was first given a deliberate overdose, and when that didn't kill him, he was stabbed repeatedly in the chest, and his wrists were cut so deeply that his hands were nearly severed from his body.
By his mother and his godmother.
Because he was autistic.
You can read more about it here and here and here.
I have been struggling to find something coherent to say about this. And there's nothing to say.
Except, maybe, that if Hell isn't empty, then Dorothy Spourdalakis and Agatha Skrodska can spend eternity there with the people who sold them the Andrew-Wakefield-inspired bill of goods about the horrors of autism.
Posted by Jade Constable (# 17175) on
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We had a story in the UK where the mother of an intellectually disabled young woman killed both her and her daughter by setting their car on fire, after being tormented by youths. If life was unbearable for her in the UK, I can only imagine how awful it must be in the US, without universal healthcare. Sure, Alex's death is deeply sad and should never have happened, but the lack of help for disabled people and their carers and the lack of proper healthcare in the US (and unfortunately due to the ConDem government, increasingly in the UK too) is truly horrifying.
Posted by Josephine (# 3899) on
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quote:
Originally posted by Jade Constable:
Sure, Alex's death is deeply sad and should never have happened, but the lack of help for disabled people and their carers and the lack of proper healthcare in the US (and unfortunately due to the ConDem government, increasingly in the UK too) is truly horrifying.
I find Alex's death at the hands of his mother and godmother truly horrifying.
And, while it is absolutely true that there is a lack of appropriate services and supports for disabled kids in this country, there had been a great deal of fundraising done for Alex, and the local hospitals had offered services that Mrs. Spourdalakis turned down. Apparently Mrs. Spourdalakis had bought into Andrew Wakefield's latest theories, and various other fringe groups, and instead of standard medical care, she wanted their snake oil and quackery for her son.
Posted by Porridge (# 15405) on
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After reading the OP, I tried to get a little basic information about Illinois' services for folks like Alex. Every state is mandated to have a three-part, federally-funded, system for individuals with developmental disabilities (autism, manifesting as it does before age 22, and affecting as it does major life activities like learning, judgment, and self-care, is a developmental disability):
1, a planning council which tracks how many people in the state need such services and what services the state provides, and which also develops both short-term and long-range plans for ensuring that services are made available;
2, a protection and advocacy system, which provides legal services to individuals with developmental disabilities, investigating complaints of abuse and neglect;
3, a research and development arm, generally located within a major university, for developing and educating service providers in current best practices in the field of developmental disabilities.
I happen to know that Illinois has, or at least had within the last 10 years, a cutting-edge research facility in this field. Websites for the current P&A center, and for the Council on Disabilities, however, do not look at all impressive.
It looks as though Alex was getting no services through any system designed for the care of folks with autism.
None of the OP links sheds any light on this strange absence of services. Did the mother reject these? Was she unaware of them?
Alex, at 14, should have been attending school regularly. With (possible) explosive and violent outbursts (and probably diminished school funding due to Illinois' economic woes), it's possible that the school did not have adequate services for Alex, and that he might have been suspended or expelled on behavioral grounds.
I feel considerable sympathy for the plight of these two women, left to their own devices (though this might have been by choice) with a non-verbal, possibly violent, and adult-sized young man with severe challenges. That people in this horrendous situation could easily be preyed upon by the nutjobs who think autism is caused by vaccines and is curable through diet is easy to grasp.
What I cannot get my head around is the fact that no agency of any kind seems ever to have got involved. Why wouldn't neighbors call social services? Why weren't police called? Why wouldn't the school be maintaining contact, even if the kid was suspended? They would still have been the LEA responsible for ensuring he got the schooling he was entitled to through age 21.
This family needed major help, and apparently got nothing. How is this possible?
My state, due to severe budget cuts two years back, provides crap-all for the folks on our system's case-loads. Even so, I and my fellow service managers are able to be physically present with each of our clients in their residences at least once every month. Not that this pathetic level of so-called "care" could prevent a murder, but someone would have been aware of a deteriorating family situation and attempted some sort of Band-Aid intervention.
If I saw anything approaching what seems to have been going on in this household, I'd call protective services, prepare an alternative placement, and have my client separated from the home on at least a temporary therapeutic order. I've done so on sparser grounds.
Why the hell was there no official involvement in this appalling situation?
Posted by PeteC (# 10422) on
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Governments only deal with cute kids. They have to draw the line somewhere.
Regardless of where you are, that's the reality most disabled people live with.
Posted by Golden Key (# 1468) on
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OMG. ![[Votive]](graemlins/votive.gif)
I read the first article (ScienceBlogs). I don't know anything about autism biomed. But I found myself wondering if there was some Munchausen's By Proxy involved. E.g., maybe one or both women were poisoning the boy in order to get attention for themselves.
May the women--and anyone who influenced them--someday realize the full horror of what they've done.
Posted by Josephine (# 3899) on
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quote:
Originally posted by Porridge:
What I cannot get my head around is the fact that no agency of any kind seems ever to have got involved. Why wouldn't neighbors call social services? Why weren't police called? Why wouldn't the school be maintaining contact, even if the kid was suspended? They would still have been the LEA responsible for ensuring he got the schooling he was entitled to through age 21.
There seems to have been a fair amount of involvement. I have no idea about the school or the neighbors. But the HuffPost article and several others I read (here's another) said that the police had been called to the home on multiple occasions, either to restrain the boy or to help the mother take the child to medical appointments, because the boy didn't want to go and she couldn't make him go without help. So the police were definitely aware. What they thought of the situation, I don't know.
The HuffPost article, and this one, said that the Department of Children and Family Services offered services that were refused. It also says that a report of negligence was investigated in January and ruled to be unfounded.
Alex was hospitalized multiple times, and was apparently restrained at the hospitals. That's not standard care, so I would assume that it was documented at the hospitals, and that a social worker or discharge planner or someone looked into his situation.
I don't know what role Alex's father had in his life -- he apparently had the cops do a well-being check when he couldn't reach Mrs. Spourdalakis, so he was concerned. I don't know what he should have or could have done. I don't know if there was a godfather. Presumably there was a priest who baptized him.
I don't know who could have protected Alex. But I know a lot of people failed him.
But most especially, the two women who murdered him. Two women who owed it to him to protect him with their own lives, if it came down to it.
Posted by Porridge (# 15405) on
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And driven round the bend by their inability to protect, or even care for him.
I have clients who drive their families nuts; it's one of the things I'm charged with watching out for. Caring for a guy like Alex (if he is indeed anything like the descriptions provided*, though I take, on the basis of experience, such descriptions with several grains of salt) can be a very steep challenge.
*Semi-tangent: Earlier in my career, I worked for my state's protection and advocacy program as a complaints investigator. My very first case, on my very first day on the job, involved a guy whose case file was three inches thick with reports from his family of his violence, his outbursts, his threatening family members with knives, etc. Coincidentally, he had a Dx like Alex's -- autistic, oppositional, non-verbal, etc. By the time I'd read through the file, I was terrified to go meet him.
For brevity's sake, I'll just say he was nothing like the descriptions in the file. He himself was terrified. I suspect the source of his terror was his family. I had him removed from the home. He ended up in a group home with proper care and did fairly well, eventually learning several words. End tangent.
What continues to gobsmack me is (A) the refusal of all services, and (B) that all services can actually be refused.
By law, in my state, when a client's interests are clearly not being served in professionals' judgment, a service like case management can be mandated by court order. This is done precisely to ensure there are official eyes on a potentially dangerous situation, precisely to prevent horrific outcomes like these.
Alex had a diagnosis, and that entitled him at a minimum to case management. I've certainly had both families and clients who disagreed with their team's approach and have been adamantly non-compliant with services. At no point, however, is the service team allowed to simply pull out of the situation, shrug their shoulders, and walk away to leave the client and the family to the mercies of fate.
People like Alex are extremely vulnerable to abuse and neglect. They can be challenging, difficult, frustrating, and even dangerous to deal with. That's exactly what turns them into targets for abuse.
I once had a client whose disrupted and disruptive sleep patterns drove his family mad. I regularly removed him from the home and placed him in therapeutic respite care (where he drove a different set of people mad for a while) so the family could re-group, rest up, and so we could adjust meds as needed, and provide re-training to the family when their responses to the client's wild or weird behavior needed tweaking.
Case management, at a minimum, can order therapeutic respite care. This might in practice only mean a weekend off for carers. But a weekend off for his mother and godmother might have saved, or at least prolonged, Alex's life.
Yes, mother and godmother were charged with protecting Alex. But when carers themselves are deprived of sleep, frustrated beyond endurance, are non-compliant, and are refusing help -- that's exactly when and why some basic level of service and intervention must be imposed, if not for their sake, then for Alex's.
Nobody was looking out for Alex and his interests here. Police should have got developmental services involved. It's not clear that the right protective services investigated; my state has three distinct branches of this service -- one that looks out for adults, one that looks out for kids, and one that looks out for people with major disabilities. A regular child protective service worker would not have had the specific training needed for evaluating this situation; s/he wouldn't have the knowledge of autism and state-of-the-art treatment to investigate a family dealing with autism.
It's exactly because Alex's interests were utterly ignored that he is now a homicide victim.
Posted by Josephine (# 3899) on
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quote:
Originally posted by Porridge:
It's exactly because Alex's interests were utterly ignored that he is now a homicide victim.
Because of that, of course. And because people with severe disabilities are too often regarded as something less than entirely human. People understand why you'd kill them.
Which is something that happens far too often.
And is regarded with too much sympathy -- for the murderers, that is, not for the victims.
[ 15. June 2013, 13:20: Message edited by: Josephine ]
Posted by PeteC (# 10422) on
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This murderer is now free. On full parole. And he still doesn't see what he did was wrong. Neither do a lot of other people.
I beg to differ from their opinion. ![[Mad]](angryfire.gif)
The parole board says that he is unlikely to kill again. Unless he has charge of another disabled child.
Even after all these years I still get angry.
[ 15. June 2013, 13:32: Message edited by: PeteC ]
Posted by Josephine (# 3899) on
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You know, I started this in Hell, because I was angry and sad and couldn't think of any way to have a reasonable conversation about this. I didn't think there was a conversation to be had.
But maybe there is. Maybe there is something that the rest of us can do to prevent the next Alex Spourdalakis or Tracy Latimer from being murdered. (Or the whole list of other disabled children murdered by parents or caregivers.)
Is there? If there's something to discuss, maybe this thread can move to Purgatory.
I don't know.
Posted by Porridge (# 15405) on
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Multiple ironies here.
The U.S. created institutions for people similar to Alex back in the early 1800s. Why? Because (some, many, a few?) families were abusing and neglecting their disabled family members -- chaining them in the woodshed, locking them in the attic, beating and starving them for behavior the victims couldn't help.
The original purpose of institutions was to ameliorate the effects of such abuse, teach the affected person a few skills, and return them to their families in a condition that made them more manageable and possibly able to contribute to family (usually agrarian, back then) life.
Surprise, surprise: relieved of the challenges, many families refused to take their family members back. So short-term institutionalization turned into life-long incarceration for the crime of falling outside the "norms."
And this in turn, over generations, led to abuse within institutions, and the shocking and appalling conditions so powerfully documented in publications like Christmas in Purgatory.
Uproar, public scandal, taxpayer monies funding the wholesale torture of people with disabilities: the public turns against institutional "care."
Usher in "community living" for people with disabilities -- deinstitutionalization, group homes, specialized foster placements, etc.
Abuse ensues. It's less-well-documented (because it's harder to document), and it's committed by staffers, members of the general public, etc. etc.
Usher in "new" idea: disabled people will remain with their families of origin, who will provide love and support and look out for vulnerable people's interests.
And will sometimes murder their own.
In about 200 years' time, we have come full circle, and we will still not have learned that we have been working, all along, on exactly the wrong problem.
It is not disabled people and our specific disabilities who are most in need of "change," though that is exactly where nearly all the effort and money goes.
It is the temporarily-abled people, and our primate-based urge to banish and punish and even murder those who fall outside some primitive instinct-based chimpanzee notion of what makes group survival as a species possible.
That is what we need to change. And we haven't even recognized that surface, much less scratched it.
Posted by Josephine (# 3899) on
:
quote:
Originally posted by Porridge:
It is the temporarily-abled people, and our primate-based urge to banish and punish and even murder those who fall outside some primitive instinct-based chimpanzee notion of what makes group survival as a species possible.
That is what we need to change. And we haven't even recognized that surface, much less scratched it.
So how do we do this? How?
Posted by Niteowl (# 15841) on
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Growing up the phrase I always heard was "having a life worth living". For some reason many people assume we disabled don't and can't possibly have a life worth living. Thus if it's determined a child is going to be born with a disability abortion is often recommended and I've even heard of hospitals setting aside and starving disabled babies. I'm extremely thankful that my parents did everything they could to ensure I'd have a productive, happy life. During the times they couldn't afford the medical costs they found assistance, which they stopped when they were financially able to handle it on their own. I understand it can be a financial nightmare and in cases where there are behavioral issues extremely frustrating. But I cannot under any circumstances wrap my head around killing your own child. Especially in some of the "hands on" ways mentioned in the list Josephine linked to.
I'd dearly love to hound the charlatans like the biomed autism people out of existence. They are a major impediment to getting people real help. I'd also like to see disabled people who are living happy productive lives getting some public attention showing that yes, we can and do have lives worth living.
Posted by Sioni Sais (# 5713) on
:
quote:
Originally posted by Josephine:
You know, I started this in Hell, because I was angry and sad and couldn't think of any way to have a reasonable conversation about this. I didn't think there was a conversation to be had.
But maybe there is. Maybe there is something that the rest of us can do to prevent the next Alex Spourdalakis or Tracy Latimer from being murdered. (Or the whole list of other disabled children murdered by parents or caregivers.)
Is there? If there's something to discuss, maybe this thread can move to Purgatory.
I don't know.
The OP was 100% Hellworthy but most of the subsequent content has been Purgatorial. Nevertheless there is still scope for Hellish comment. I'll confer with my Purgatory co-hosts.
Sioni Sais
Hellhost
Posted by Sioni Sais (# 5713) on
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I have checked with my co-hosts here and in Purgatory and we feel there should be two threads. This in Hell can contain the anger and another in Purgatory for the rational debate.
I'll create an OP in Purgatory linked to the OP here.
Sioni Sais
Hellhost
Posted by Jade Constable (# 17175) on
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The Tracy Latimer case seems rather different to this - Robert Latimer ended his daughter's terrible pain and was done out of mercy (even if you disagree with euthanasia, the intention was kindness and mercy, not malice). Alex's death seems more complex and I wouldn't call it euthanasia (whereas Tracy's death is very much euthanasia).
There's a difference between a disabled person being seen to not have a good quality of life, and a disabled person having a quantifiably poor quality of life - obviously, it is a difficult thing to qualify but certainly a lot of physical pain is an example.
Posted by PeteC (# 10422) on
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You've bought the media line, Jade. Tracy had cerebral palsy. The only pain involved with CP is from the tightening of muscles due to lack of exercise - and that can be severe. But the answer is manipulation. And proper care. None of which she seemed to have.
I lived through the infamous trials of the pathetic excuse of a father, who managed to tug media heartstrings.
Do you know that he gassed Tracy and then went to church with the rest of his family?
Jesus wept.
PS - for your information, I am a severe spastic, born, like Tracy, with cerebral palsy.
Save your puling support of euthanasia for Purgatory. You'll find fellow-travellers there.
[ 16. June 2013, 00:18: Message edited by: PeteC ]
Posted by Zach82 (# 3208) on
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Sigh- what a second rate world we've got. ![[Frown]](frown.gif)
Posted by comet (# 10353) on
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quote:
Originally posted by Jade Constable:
The Tracy Latimer case seems rather different to this - Robert Latimer ended his daughter's terrible pain and was done out of mercy (even if you disagree with euthanasia, the intention was kindness and mercy, not malice). Alex's death seems more complex and I wouldn't call it euthanasia (whereas Tracy's death is very much euthanasia).
There's a difference between a disabled person being seen to not have a good quality of life, and a disabled person having a quantifiably poor quality of life - obviously, it is a difficult thing to qualify but certainly a lot of physical pain is an example.
what complete and utter hankie-wringing horseshit, for all the reasons Pete notes (and he knows way better than me) but also because I know a number of people with CP and their brains are just fine. It's their call, no one else's. Meanwhile, they're going about being contributing members of society. what bullshit.
my little quirk IS one that causes pain. fuckin' sucks. but the first jackass who comes along and tries to "end my pain" out of some gooshy sense of kindness is going to get my twitchy baseball bat to their testicles.
that's MY call.
fuck that guy.
Posted by Doublethink (# 1984) on
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Reading the wiki it would suggest that the victim was severely intellectually disabled as well as severely physically disabled.
What I don't understand is why her pain control was so crap - I know lots of people on anti-convulsant medication who are able to take painkillers. If her father cared so much about her, that is what he should have been trying to sort out.
Posted by PeteC (# 10422) on
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It was easier to kill her when she became less cute and less smaller.
Posted by Doublethink (# 1984) on
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Indeed. It is a similar logic underlying the pillow angel idea - which seems to me extremely abusive.
Posted by Jade Constable (# 17175) on
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Er, where did I say that I was in support of euthanasia? All I said was that it was euthanasia, which I don't think it was with Alex. I didn't know it was OK to put words into my mouth even if it is Hell.
Posted by Jade Constable (# 17175) on
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FWIW I am not in support of euthanasia being legal.
Posted by Gwai (# 11076) on
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Jade, where do you see the difference between euthanasia and murder? If you come down with a painful condition later, but still love life and are happy, can some person decently come, hold a pillow over your face, and tell the world they did you a favor?
Heck, why would it be inappropriate to euthanize you against your will right now? The world's full of pain, perhaps we should just send you to heaven where you won't have bad things happen.
Posted by Jade Constable (# 17175) on
:
quote:
Originally posted by Gwai:
Jade, where do you see the difference between euthanasia and murder? If you come down with a painful condition later, but still love life and are happy, can some person decently come, hold a pillow over your face, and tell the world they did you a favor?
Heck, why would it be inappropriate to euthanize you against your will right now? The world's full of pain, perhaps we should just send you to heaven where you won't have bad things happen.
I don't think there is a difference in the outcome, I was just pointing out the difference in motive. And there is clearly a difference between 'the world's full of pain' and being in real, agonising physical pain. I don't understand why I'm being misquoted so - all I pointed out was the difference in motive between the two cases, not that one is right and one is wrong. I did not say I was in favour of euthanasia and said clearly that I wasn't, so why are words being put in my mouth?
Posted by Josephine (# 3899) on
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quote:
Originally posted by Jade Constable:
And there is clearly a difference between 'the world's full of pain' and being in real, agonising physical pain.
The problem is that, in every case that I can think of where the parents killed a disabled child, the child wasn't suffering from uncontrolled and uncontrollable physical pain. Rather, the parent was suffering from the unremitting needs of the child.
And while killing the child may have been a mercy to the parent, it was not a mercy to the child. And calling it euthanasia or mercy killing distracts from what it really is: plain, old-fashioned murder.
Posted by Jade Constable (# 17175) on
:
quote:
Originally posted by Josephine:
quote:
Originally posted by Jade Constable:
And there is clearly a difference between 'the world's full of pain' and being in real, agonising physical pain.
The problem is that, in every case that I can think of where the parents killed a disabled child, the child wasn't suffering from uncontrolled and uncontrollable physical pain. Rather, the parent was suffering from the unremitting needs of the child.
And while killing the child may have been a mercy to the parent, it was not a mercy to the child. And calling it euthanasia or mercy killing distracts from what it really is: plain, old-fashioned murder.
But the parents' aim was to be a mercy to the child - whether that was the case or not, that was still the intention.
You and Pete have still misrepresented my view.
Posted by PeteC (# 10422) on
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Jade Constable said upthread that quote:
Tracy's death was very much euthanasia
and then goes on to speak approvingly of Robert Latimer of acting in kindness and mercy.
What he did was murder an inconvenient child, and you call it euthanasia.
I don't think that Josephine and I have misrepresented you at all. You've just been too busy covering your ass and not being successful.
Posted by Tubbs (# 440) on
:
quote:
Originally posted by Jade Constable:
quote:
Originally posted by Josephine:
quote:
Originally posted by Jade Constable:
And there is clearly a difference between 'the world's full of pain' and being in real, agonising physical pain.
The problem is that, in every case that I can think of where the parents killed a disabled child, the child wasn't suffering from uncontrolled and uncontrollable physical pain. Rather, the parent was suffering from the unremitting needs of the child.
And while killing the child may have been a mercy to the parent, it was not a mercy to the child. And calling it euthanasia or mercy killing distracts from what it really is: plain, old-fashioned murder.
But the parents' aim was to be a mercy to the child - whether that was the case or not, that was still the intention.
You and Pete have still misrepresented my view.
Intentions don't necessarily justify actions. You seem to be saying that some actions are okay if the person meant well. And that's just bullshit.
Tubbs
Posted by lilBuddha (# 14333) on
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Jade,
From the wiki article Pete linked:
quote:
Tracy attended school regularly in Wilkie.[11] People who worked with Tracy in group homes and schools described her smile, love of music and reaction to horses at the circus.[6] According to the Crown prosecutors' brief presented at the second trial, "She also responded to visits by her family, smiling and looking happy to see them. There is no dispute that through her life, Tracy at times suffered considerable pain. As well, the quality of her life was limited by her severe disability. But the pain she suffered was not unremitting, and her life had value and quality."
Latimer's action should not be given any euphemism to make them softer. He did what he did for himself.
Posted by Jade Constable (# 17175) on
:
quote:
Originally posted by PeteC:
Jade Constable said upthread that quote:
Tracy's death was very much euthanasia
and then goes on to speak approvingly of Robert Latimer of acting in kindness and mercy.
What he did was murder an inconvenient child, and you call it euthanasia.
I don't think that Josephine and I have misrepresented you at all. You've just been too busy covering your ass and not being successful.
Tracy died because her father believed her to be (whether that was the case or not) in terrible pain. That makes it euthanasia, in contrast to Alex's case. I have not given approval to the euthanasia, just pointed out that it was so. Robert Latimer did act in kindness and mercy, how is that fact incompatible with believing that what he did was wrong? It's not. I believe he acted out of mercy AND was wrong.
You and Josephine have misrepresented my view, because my view has more nuance than what you are saying it is.
Posted by Jade Constable (# 17175) on
:
quote:
Originally posted by Tubbs:
quote:
Originally posted by Jade Constable:
quote:
Originally posted by Josephine:
quote:
Originally posted by Jade Constable:
And there is clearly a difference between 'the world's full of pain' and being in real, agonising physical pain.
The problem is that, in every case that I can think of where the parents killed a disabled child, the child wasn't suffering from uncontrolled and uncontrollable physical pain. Rather, the parent was suffering from the unremitting needs of the child.
And while killing the child may have been a mercy to the parent, it was not a mercy to the child. And calling it euthanasia or mercy killing distracts from what it really is: plain, old-fashioned murder.
But the parents' aim was to be a mercy to the child - whether that was the case or not, that was still the intention.
You and Pete have still misrepresented my view.
Intentions don't necessarily justify actions. You seem to be saying that some actions are okay if the person meant well. And that's just bullshit.
Tubbs
Please show me where I said what Robert Latimer did was right. I said that his intentions differed from Alex's mother, but did not say that either was right. I don't think that Robert Latimer was right at all, but I think his is a different case to Alex's. Why is that so controversial?
Posted by comet (# 10353) on
:
quote:
Originally posted by Josephine:
quote:
Originally posted by Jade Constable:
And there is clearly a difference between 'the world's full of pain' and being in real, agonising physical pain.
The problem is that, in every case that I can think of where the parents killed a disabled child, the child wasn't suffering from uncontrolled and uncontrollable physical pain. Rather, the parent was suffering from the unremitting needs of the child.
And while killing the child may have been a mercy to the parent, it was not a mercy to the child. And calling it euthanasia or mercy killing distracts from what it really is: plain, old-fashioned murder.
EXACTLY.
this wasn't euthanasia. it was murder. Tracy was inconvenient to her father. There is help; he should have asked for it.
Posted by Doublethink (# 1984) on
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I am not sure I always believe what someone says about their reasons for committing murder - especially when those reasons are likely to be seen as mitigating their offence.
People who have sexual contact with children often say they didn't intend to harm them - I don't always believe that either.
Posted by Fineline (# 12143) on
:
The story of the autistic boy is very sad. Oddly, perhaps, it doesn't surprise me. It seems to me a situation which might happen sometimes.
Something I read about recently is a link between autistic children and parents with mental illnesses - that autism is more common in children whose parents have mental illnesses. Now, thinking about this logically, I suppose it could be more a case that people with undiagnosed autism are more likely to have mental health problems, and autism runs in families, so it could be that the parents are on the autism spectrum and not diagnosed, and struggling as a result. Not that mental illnesses make people violent, of course, but if the person is not supported, then raising a child, particularly an autistic child, must become incredibly difficult, and I can see how the person may get to a point where they literally cannot cope. Not that this justifies murder, of course, or abuse. But I see how it happens, even though it is not justified.
Just thinking of my own childhood. I am on the autism spectrum - very high functioning, so not like this boy, but still I was considered a 'difficult child'. Undiagnosed, because I had a very high IQ, so it was considered I couldn't be on the autism spectrum - Aspergers was not heard of then. But my mother, who has mental health difficulties (which she didn't get addressed), was very abusive to me. There were times when she could have killed me. I was lucky that she didn't. But I see how it happens. It's terribly wrong, of course. But it happens that sometimes parents can't cope and sometimes behave in truly awful ways. I am not angry with my mother. I used to be, at one point, but now I feel sorry for her. Not that I justify her behaviour. She had enough awareness to carefully conceal things from concerned teachers and social workers. But I just think how awful it must be to be her. And I think this about the mother of Alex, when I read this story. And of course awful for the boy. It makes me feel very sad.
Posted by Twilight (# 2832) on
:
quote:
Originally posted by Jade Constable:
You and Josephine have misrepresented my view, because my view has more nuance than what you are saying it is.
Exactly. Josephine was playing the same straw man game with me in Purgatory so that I just gave up trying to debate with her.
Of course intentions matter, every court of law takes it into account, and not every death by another is a murder one case.
There are plenty of nuances in this case. I'm sure Alex's mother will be charged with murder but I expect the jury will be asked to consider lots of things when it comes to sentencing; her IQ, her mental and physical health, and the number of occasions when she has felt her own life in danger.
I once took a NAMI class with a woman who clearly loved her severely schizophrenic son. She showed up at every class even though she worked all day as a cleaner, she wanted to learn every thing she could to help him -- but she told stories of this grown son attacking her that were pretty horrific. One time he followed her into the garage and beat her with the metal garbage bin until her arms were broken.
Maybe some day she will be simply too old to care for him and unwilling to send him to a state run mental hospital. Or maybe they won't have room for him or he won't qualify for commitment.
Maybe, like many, many people and possibly like Alex's mother, she has been told over and over by women like Josephine that it is her job to care for and protect her son, to the point where she would be ashamed to accept help. When that day comes she might do something we would all agree was wrong, but I for one would understand it.
Posted by Niteowl (# 15841) on
:
It might be very easy for a non disabled person to sympathize with the parents - but it's a different ball of wax when you're on the other side of the equation as a disabled person. I can't tell you how many times I overheard people saying I couldn't possibly have a quality life. That wasn't my view, thank you very much. I have NO sympathy whatsoever for parents who murder their children. And it is murder for their own convenience, not the bullshit that it's better for the child.
Posted by Porridge (# 15405) on
:
One of the principles I and my co-workers must always bear in mind is that a client's best interests sometimes fail to conform to or even overlap with what's in the best interests of his/her family.
And it's our job to look out for the client's.
Second principle: the rationale or explanation for, or etiology of, abuse is not an excuse.
As noted above, my sympathy, if that's what it is, for the killers of Alex is limited to understanding that these women were driven beyond their endurance. I have some sympathy for that.
What I do not have sympathy for is their failure, in the face of such desperation, to reach out for help, if only to protect Alex from their unbearable frustration.
How and why people feel privileged to decide about someone else's existence is beyond me.
Posted by Josephine (# 3899) on
:
quote:
Originally posted by Twilight:
Maybe, like many, many people and possibly like Alex's mother, she has been told over and over by women like Josephine that it is her job to care for and protect her son, to the point where she would be ashamed to accept help.
That's bullshit, Twilight, and you know it.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Twilight:
Maybe, like many, many people and possibly like Alex's mother, she has been told over and over by women like Josephine that it is her job to care for and protect her son, to the point where she would be ashamed to accept help.
She chose to refuse help as it did not feed her beliefs. She chose to place herself in the position. She chose to murder.
Posted by Twilight (# 2832) on
:
quote:
What I do not have sympathy for is their failure, in the face of such desperation, to reach out for help, if only to protect Alex from their unbearable frustration.
Just as some here have heard, (to my absolute horror,) people suggesting that they have "no quality of life," most parents of disabled children have heard, over and over, "Why didn't they get help?"
I don't know what was available for Alex, whether "help," had been tried and deemed ineffective or harmful or what, but in the case of most families of adults with severe mental illness, help just isn't there. We make appointments for our children to see psychiatrists and they refuse to go. They try to kill themselves or their family members and maybe they get 48 hours in the hospital before being sent back home. They do something really violent and we have the option of covering it up or calling the police and risking that our ill child will end up in prison, beaten by guards who are not trained to deal with mentally ill people.
As for help for the caregiver, that usually just doesn't exist at all. Who's going to baby sit an out of control adult?
So the caregiver parent goes for thirty or forty years without a holiday or a night out with the girls. Even being longer at the grocery store can cause a panic attack at home. Many don't even dare to tell church friends or neighbors because they know they will be blamed for causing their child's disease. So they become isolated until something really bad happens and everyone points the finger at them for not getting help.
I have had a very ill person beg me for help with suicide. If I heard that every day from a son or daughter who seemed to be in constant pain with no hope of relief, it would be hard, because I would consider myself, as the person who loved them most in the world, to be possibly the only person who would be willing to accept imprisonment, or worse, in order to help them. I would never do it because I simply could not, and I would never support anyone else's decision to do that as the right choice, but I'm not going to judge others with the "they were just being selfish" stick. I think it's far sadder and more complicated than that.
Posted by lilBuddha (# 14333) on
:
Twilight,
Multiple. Stab. Wounds. To an unconscious person.
Posted by Nicolemr (# 28) on
:
It seems to me that a large part of this is sheer overwhelming dispair. It's not as if the. perpetrators expected to live past the crime and be exhonerated, they chose to try and die too.
[ 16. June 2013, 22:54: Message edited by: Nicolemr ]
Posted by orfeo (# 13878) on
:
If only the children got to tell THEIR story during a trial.
Posted by Porridge (# 15405) on
:
quote:
Originally posted by Twilight:
I don't know what was available for Alex, whether "help," had been tried and deemed ineffective or harmful or what, but in the case of most families of adults with severe mental illness, help just isn't there.
First, Alex did not have an MI diagnosis, nor was he an adult. He was autistic and a minor. The difference matters because, while MI, depending on diagnosis, can create enormous and even dangerous chaos in the household, given that its courses can be utterly unpredictable, autism usually presents with a fairly stable (however challenging) set of symptoms (though potentially unique to each individual) and fairly predictable responses to recurringcircumstances. (All bets go off the table if the household is itself chaotic in terms of housekeeping or routine, or if carers are demanding frequent changes in behavior, etc. The autistic folks I've dealt with go off the rails when required to adapt to changes made by others.)
Further, the law mandates help for minors with developmental disabilities. Adults are a different kettle of fish; adults can refuse treatment.
Second, much of the basic help mandated by the Feds at state level does not depend on either believing or disbelieving in vaccination, or biomed regimens. As a minor, Alex should have been in school. If his mother refused school, then she must have been required by law to provide a state-approved curriculum appropriate to his developmental level, either by placing him in a private program for autistic kids, or by home-schooling him under the aegis of her state's Board of Ed. This in turn would likely have been overseen periodically by someone from their LEA. This is not optional; mom's failure either to keep him in school or to provide a schooling substitute should have brought the law down on the household if the refusal was at her end.
If it was the school who suspended or expelled Alex on behavioral grounds, then the school was required to come up with an alternative, at school district expense. Again, refusing this alternative is an option only when parents provide some substitute. In either case, the school clearly dropped a ball, and bears some responsibility for this tragedy.
Having a kid with an IEP is no picnic. One result is that parents get worn down after years of fighting tooth and claw for something from the school that will help their kid. Sometimes they just give up.
That is exactly why every state has a protection and advocacy center whose responsibility it is to offer legal representation to families like Alex's.
Posted by Twilight (# 2832) on
:
Right Porridge, I appreciate all your expertise on this. I know Alex, as a youth with autism, is in a very different situation from adults with mental illness, which is why I was meaning to speak to the broader discussion here of parents not getting help for their disabled family members.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Twilight:
Right Porridge, I appreciate all your expertise on this. I know Alex, as a youth with autism, is in a very different situation from adults with mental illness, which is why I was meaning to speak to the broader discussion here of parents not getting help for their disabled family members.
Ahem. If your focus is on parents, then why are you bringing up adults with mental illness?
The relevance is minimal at best. I realise that adults with mental illness are capable of having parents, but even then if you're trying to talk about adults who have required care since childhood your terminology is arsed up. Many adults with mental illness developed that illness as adults, and it is not necessarily a permanent state of affairs, making them pretty irrelevant to a discussion of children with essentially permanent developmental conditions.
Do you want to shut up now, or dig the hole a little deeper?
[ 17. June 2013, 05:10: Message edited by: orfeo ]
Posted by Twilight (# 2832) on
:
quote:
Originally posted by orfeo:
If only the children got to tell THEIR story during a trial.
That's the saddest part. Alex was never at any time in his life able to tell his story. He was never able to express his views on anything, he couldn't tell us whether he was happy or miserable, comfortable or in pain, whether music soothed him or sounded like horrible noise. Maybe if he could speak at his mother's trial he would speak for the prosecution and ask for her life in exchange for his own or maybe he would speak for the defense and thank her for freeing him from his torture. We don't know.
Orfeo, you think I have no right to express an opinion on this thread because my experience is with parents of schizophrenics and not with parents of autistics. If we're trying to understand what possessed Alex's mother to do this thing, then I don't see a huge difference between caring for an out of control autistic 14 year-old and caring for an out of control schizophrenic 18 year-old.
Posted by orfeo (# 13878) on
:
Oh, you have a right to express an opinion. We have the right to express what we think of your opinion.
It would sure help if you expressed your opinion with a bit more clarity, though. Like, making clear if you're talking about just turned 18 kids rather than middle-aged people who've developed a mental illness, for fuck's sake.
Posted by Twilight (# 2832) on
:
Well Orfeo if I had known it mattered so much to you I would have tried to specify the ages of everyone involved in all my examples but I really don't see what difference it makes when talking about the stresses of being a combination parent/care-giver. We don't love our children any less when they are 45 than we did when they were 6. If they are suffering from a disease does it matter whether it began at 20 or 16?
Posted by Josephine (# 3899) on
:
I do understand how hard it is to deal with severe disabilities that result in violent outbursts. That can happen with developmental disorders, mental illness, and certain neurological disorders (like dementia). It's hard to be the caregiver. Really, really hard.
And I can understand the caregiver who, sleep-deprived, frightened, frustrated, despairing, just snaps. Who, say, hits the person they're caring for hard enough to knock them down the stairs, resulting in their death.
But Mrs. Spourdalakis didn't just snap. She conspired to commit premeditated murder. That, I cannot understand. That, I have no sympathy for.
During the time she was planning the murder, she had other options. She could have called Alex's father and said, "I can't do this any more. Come get him."
She could have called child protective services and said, "I can't do this any more. Come get him."
She could have called the cops, or Alex's doctor, or "Dr." Wakefield (who had spent time at Alex's bedside, helping raise funds for Alex's care).
But she didn't do any of those things. Instead, she plotted murder.
There is no excuse. There can be no excuse. This was cold-blooded, pre-meditated murder.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Twilight:
Well Orfeo if I had known it mattered so much to you I would have tried to specify the ages of everyone involved in all my examples but I really don't see what difference it makes when talking about the stresses of being a combination parent/care-giver. We don't love our children any less when they are 45 than we did when they were 6. If they are suffering from a disease does it matter whether it began at 20 or 16?
Yes, I think it matters quite a lot whether or not the ill person was living an independent existence before they started requiring care.
I also think it matters quite a lot whether someone actually has a condition that can properly be called an 'illness'. Someone who was previously 'well' can sensibly be described as having an 'illness'. I have doubts that someone who is how they have always been, and who will always be that way, should be thought of as 'ill'.
[ 17. June 2013, 16:42: Message edited by: orfeo ]
Posted by mousethief (# 953) on
:
quote:
Originally posted by orfeo:
I have doubts that someone who is how they have always been, and who will always be that way, should be thought of as 'ill'.
Would you apply that to, say, an infant born with spina bifida?
Posted by orfeo (# 13878) on
:
quote:
Originally posted by mousethief:
quote:
Originally posted by orfeo:
I have doubts that someone who is how they have always been, and who will always be that way, should be thought of as 'ill'.
Would you apply that to, say, an infant born with spina bifida?
Yes, probably, in that I doubt I would describe that as an illness or a sickness. A condition? A disability?
Posted by mousethief (# 953) on
:
At this point it looks like you're splitting straws.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Josephine:
But Mrs. Spourdalakis didn't just snap. She conspired to commit premeditated murder. That, I cannot understand. That, I have no sympathy for.
Surely something must have snapped inside her for her to do this. Some inability to see the consequences of her actions - or maybe she had got to the point where she didn't care any more. It is not a rational, well mind that plots murder like this. It has huge consequences for herself too. It's not logical - on the one hand it seems she wanted to kill the boy to make things easier for herself, but of course it isn't going to do this. She will then be a murderer, and have consequences to pay. Most abusers are quite careful to hide their abuse, and not to go too far, because they don't want to pay the consequences. This mother had somehow reached a point beyond this. I don't understand what this must feel like, but I imagine it must be a terrible place to be.
Posted by lilBuddha (# 14333) on
:
Terrible indeed. It is her method which pushes more towards this being about herself than her son. Rationality is lost in either case.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by mousethief:
At this point it looks like you're splitting straws.
That may well be your opinion, but I don't think I am. There is an utterly fundamental difference between dealing with 'ill' people who might be capable of cure, and dealing with people who simply are who they are.
One of the dangers of labelling people born autistic or with cerebral palsy (which is emphatically not any kind of 'mental illness' whatsoever) or deaf or anything lifelong as 'ill' is that it then enables a mindset that the person 'will always be ill'.
And heck, no-one would want to live permanently 'sick', right? It would be a kindness to put such a person out of their 'misery', right?
Words like these matter, precisely because the straws I'm splitting set people on different paths of thinking. It's potentially the difference between seeing a person as having opportunities to lead a rich life within their abilities and seeing a person as having a problem that can only be solved by dying.
Posted by Fineline (# 12143) on
:
With regard to the discussion between Orfeo and Mousethief, autism is not usually considered a disease or an illness, and autistic people often take offence to it being described that way. It's a difference in the way the mind works. It can be called a disability, a condition, a disorder, but not normally an illness. It can have co-occurring illnesses though, such as digestive problems. On the other hand, I have these digestive problems, but I do not define myself as 'ill'. I see Orfeo's point here. I know someone with spina bifida, and I very much doubt he'd describe himself as ill either. Disabled, yes, but ill, no. I imagine there are exceptions to Orfeo's rule though - if someone is born with cancer, then they are ill.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by orfeo:
There is an utterly fundamental difference between dealing with 'ill' people who might be capable of cure, and dealing with people who simply are who they are.
Ah, I crossposted with this when I gave the example of someone born with cancer - I didn't know you were meaning people not capable of being cured. In that case, yes, I totally agree with you. With your whole post. I work with severely disabled children, who will always be that way, and I don't see any of them as 'ill' - unless they get flu or a tummy bug, and then they are ill during the time it lasts. But their disability is not illness, in my mind. It is just part of who they are.
[ 17. June 2013, 17:55: Message edited by: Fineline ]
Posted by RuthW (# 13) on
:
quote:
Originally posted by Josephine:
But Mrs. Spourdalakis didn't just snap. She conspired to commit premeditated murder. That, I cannot understand. That, I have no sympathy for.
Well, it's good to know that you too have your limitations.
Posted by ken (# 2460) on
:
quote:
Originally posted by lilBuddha:
Terrible indeed. It is her method which pushes more towards this being about herself than her son. Rationality is lost in either case.
Like I said on the other thread, they killed the cat.
And they tried to kill each other.
This doesn't look like someone "just snapping" at all. It looks like a suicide pact.
My guess is that Alex, the cat, and one of the adults (no idea which) are basically collateral damage in the other adult's botched suicide. One of them was seriously mentally ill and also very evil (the two are not mutally exclusive any more than than being sane and evil are mutually exclusive). Is my guess.
Posted by lilBuddha (# 14333) on
:
Killing the cat indicates crazy, yes. The suicide attempt indicates that she was attempting to relieve her own pain. Plunging a knife repeatedly into the body of someone she was supposedly cared about? This screams anger, no, it screams RAGE. She was angry at the pain he caused her, not caring about the pain he was suffering.
The suicide, if she hoped to die, seems likely to escape consequence.
Yes. Evil, crazy and selfish.
Posted by Porridge (# 15405) on
:
quote:
Originally posted by orfeo:
quote:
Originally posted by mousethief:
At this point it looks like you're splitting straws.
That may well be your opinion, but I don't think I am. There is an utterly fundamental difference between dealing with 'ill' people who might be capable of cure, and dealing with people who simply are who they are.
One of the dangers of labelling people born autistic or with cerebral palsy (which is emphatically not any kind of 'mental illness' whatsoever) or deaf or anything lifelong as 'ill' is that it then enables a mindset that the person 'will always be ill'.
And heck, no-one would want to live permanently 'sick', right? It would be a kindness to put such a person out of their 'misery', right?
Words like these matter, precisely because the straws I'm splitting set people on different paths of thinking. It's potentially the difference between seeing a person as having opportunities to lead a rich life within their abilities and seeing a person as having a problem that can only be solved by dying.
And part of this tragedy may stem from this distinction.
Mrs. Spourdalakis, the godmother, or both may have believed that Alex experienced a condition that was (A) preventable (that is, due to vaccinations) and/or (B) curable (the biomed stuff). Either belief alone could have generated intense rage and/or intense frustration, though not necessarily at Alex. Both together may be implicated in Alex's murder, though.
And that's exactly what makes Orfeo's "strawsplitting" so important, and why people who insist on spreading lies, bogus "science" and conspiracy theories (a la the Wakefield loon and the biomed women, and don't even get me started on "facilitated communication") are so dangerous.
Some years back, I had a relative diagnosed with MS. I recall the first 2-3 years afterward, her family was consumed with following bunkum diets and pursuing assorted useless "treatment" regimens. It's a terrible diagnosis, and of course we all want to try dodging the bullets bearing our names. But the false (and repeatedly crushed) hopes were sometimes nearly as debilitating as the MS itself.
Fortunately, they eventually came to their senses and began taking standard, best-practices, medical advice.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Porridge:
Fortunately, they eventually came to their senses and began taking standard, best-practices, medical advice.
But this can be problematic. Not all medical professionals are up to the task. The wrong medication and there is no return. It is a difficult position to be in, especially for those who are not equipped to do their own research.
However, none of this justifies the actions these women took.
Posted by mousethief (# 953) on
:
quote:
Originally posted by orfeo:
It's potentially the difference between seeing a person as having opportunities to lead a rich life within their abilities and seeing a person as having a problem that can only be solved by dying.
I'm not seeing the equivalence between "ill" and "might as well die."
Posted by Porridge (# 15405) on
:
quote:
Originally posted by mousethief:
quote:
Originally posted by orfeo:
It's potentially the difference between seeing a person as having opportunities to lead a rich life within their abilities and seeing a person as having a problem that can only be solved by dying.
I'm not seeing the equivalence between "ill" and "might as well die."
Can't speak for orfeo, but for me, that's the wrong equivalence (though there are those who do regard severely disabled people as "throwaways").
When someone might be curable, carers generally make every possible effort to effect that cure and restore the person to a pre-illness state of health. When someone with an illness is deemed not curable, the nature of carers' efforts change. In incurable illness, we strive for palliative measures (think easing pain in a terminal cancer patient) and/or disease management (think lifestyle changes for the diabetic).
In disabling conditions which are by nature not curable (at least in our current knowledge), we strive to match or adapt existing functionality to specific daily living or occupational skills. One of my clients had a perseverative behavior of turning papers over. Occupational therapists were eventually able to train him to use this behavior to stuff ad inserts into a little freebie community publication. He loved this job, he earned a small income, and he ultimately became the publisher's longest-term and most reliable insert guy because the job was incredibly boring to most other people, and the hours (midnight-4 a.m. three nights a week) were not congenial for most workers.
Posted by Twilight (# 2832) on
:
I think Orfeo's "ill" vs "disabled," is just another nitpick to justify telling me to shut-up because my points were irrelevant. First it was because my examples were about adults rather than children and then it was because I said "ill" instead of "disabled."
It's just semantics. There's a huge overlap in both medicine and government. Many people who are defined as "ill," by their doctors receive disability checks from the government.
It's amusing to me that Orfeo has taken such a hard line against this mother for losing her mind (or whatever happened) under the strain of 14 years caring for her difficult son when Orfeo himself is the most impatient person on earth. See TICTH thread. ![[Biased]](wink.gif)
Posted by Jane R (# 331) on
:
No, it's not "just" semantics. Pick a Paralympian - Ellie Simmonds, for example, current world record holder in the 400m freestyle. She could beat me easily in a swimming race - probably with both arms tied (actually my 9-year-old daughter can beat me, so this is not saying very much). Yet she is classed as disabled and I am not.
My grandfather, who lost one of his legs as a result of a mining accident, used to get very annoyed with people who referred to him as 'sick' when he was perfectly healthy and capable of looking after himself.
The words we choose to describe people DO affect how we think of them.
(I referred to him as 'Grandad', btw.)
Posted by Twilight (# 2832) on
:
Well I would hate to be called disabled if I was perfectly able to do anything I wanted even though I might have a chronic illness. It may matter a lot one way or another to each individual but we're never going to agree that one label promotes better care and understanding than another.
Posted by lilBuddha (# 14333) on
:
It is not the label, but the perception.
And Twilight, why do you take such a hard line in defense?
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by lilBuddha:
It is not the label, but the perception.
Right. That's why I don't mind people calling me 'faggot' as long as they mean it in a nice way.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Twilight:
It's amusing to me that Orfeo has taken such a hard line against this mother for losing her mind (or whatever happened) under the strain of 14 years caring for her difficult son when Orfeo himself is the most impatient person on earth. See TICTH thread.
![[Killing me]](graemlins/killingme.gif)
Ain't that the truth.
Posted by lilBuddha (# 14333) on
:
quote:
Originally posted by Sine Nomine:
quote:
Originally posted by lilBuddha:
It is not the label, but the perception.
Right. That's why I don't mind people calling me 'faggot' as long as they mean it in a nice way.
Nice way to miss the point. A bad label is bad, no matter who uses it. But a more positive label only works if the accompanying attitude is also changed. Otherwise gay merely becomes the new faggot.
Posted by Sine Nomine (# 66) on
:
Your me missing the point is my you not 'splaining yourself very well.
Posted by lilBuddha (# 14333) on
:
Fair cop. Bad habit.
Posted by orfeo (# 13878) on
:
It's amusing to me that Twilight thinks I've taken such a 'hard line' against Twilight. I don't know, a few casual remarks on your iPhone while travelling and some people just go to pieces.
This is Hell, sweetie. When I take a hard line your innards will know about it.
Posted by Sine Nomine (# 66) on
:
Twilight was here six years before you showed up. She knows about Hell, believe me. That's why we still can't mention the voices.
Posted by passer (# 13329) on
:
quote:
Originally posted by Sine Nomine:
Twilight was here six years before you showed up. She knows about Hell, believe me.
Hope this helps,orfeo!
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Sine Nomine:
Twilight was here six years before you showed up. She knows about Hell, believe me. That's why we still can't mention the voices.
And I know about Twilight.
Posted by Twilight (# 2832) on
:
quote:
Originally posted by orfeo:
It's amusing to me that Twilight thinks I've taken such a 'hard line' against Twilight. I don't know, a few casual remarks on your iPhone while travelling and some people just go to pieces.
This is Hell, sweetie. When I take a hard line your innards will know about it.
I said you were taking a hard line against Alex's mother, not me. Have you been texting on your iPhone so much you've forgotten how to read whole sentences?
Posted by mousethief (# 953) on
:
quote:
Originally posted by passer:
Hope this helps,orfeo!
Times two.
Posted by orfeo (# 13878) on
:
quote:
Originally posted by Twilight:
quote:
Originally posted by orfeo:
It's amusing to me that Twilight thinks I've taken such a 'hard line' against Twilight. I don't know, a few casual remarks on your iPhone while travelling and some people just go to pieces.
This is Hell, sweetie. When I take a hard line your innards will know about it.
I said you were taking a hard line against Alex's mother, not me. Have you been texting on your iPhone so much you've forgotten how to read whole sentences?
Yes.
Posted by comet (# 10353) on
:
I can only speak for myself, here. With my... challenge, I guess, it was only after I quit thinking about it as an illness that I was able to get closer to a healthy mind-set and move on with my life.
Thing is, when everyone (especially one's self) always tells you you're "ill" or "sick" or even "disabled" it's really easy to go tits up and tell yourself you CAN'T. Can't do what you used to, can't take part in activities, can't run a mile, can't lift weights, can't do the same job you've done for years, can't join in any of the reindeer games.
So you nest up on the couch and indulge in the mother of all pity-parties. And everyone lets you, because, "aw, you poor thing. It's totally okay, you being ill and all.". And life will just pass you by unless you decide you're sick of being sick. (or if the right person sends you a PM saying essentially, "get on with it!" love you, Uncle Pete!)
So, I've got MS. I'm not sick. I'm actually disgustingly healthy. I'm not disabled, but I do have to do things differently than other folks. Mostly I have to know myself and my little quirks really well, so I don't piss off the Lion who dwells in my nervous system.
Names count. Attitudes go with the names. What is a better term? I dunno. I got quirks, yo. But I'm not sick.
[edited for pedantry. Edited hours later because I can.]
[ 19. June 2013, 00:00: Message edited by: comet ]
Posted by RuthW (# 13) on
:
quote:
Originally posted by Porridge:
It is not disabled people and our specific disabilities who are most in need of "change," though that is exactly where nearly all the effort and money goes.
It is the temporarily-abled people, and our primate-based urge to banish and punish and even murder those who fall outside some primitive instinct-based chimpanzee notion of what makes group survival as a species possible.
That is what we need to change.
You could even argue that rising above our evolutionary past would be good for us as a species, but "temporarily-abled" is a bullshit word, right up there with "check your privilege."
Posted by Porridge (# 15405) on
:
I was clutching at my pearls; sorry.
Would you prefer "those who operate under the mistaken delusion that they're somehow more 'able' than the so-called disabled?"
Many of us live into old, even extremely old,age, and we lose functionality we once had. AFAIK, just about everything is temporary.
Posted by PeteC (# 10422) on
:
Those of us who are disabled often refer to those who aren't (or think they aren't) as TABs. Good on you, Porridge.
Bullshit words are the words that others force us into.
Posted by RuthW (# 13) on
:
Some people aren't more able than others? Tell that to my mother while she's getting my father to take his Parkinson's medication, managing their finances on her own, re-assuring him that there is not in fact a stranger in the next room, saying grace at meals when he can't speak, wiping away his drool (turned bright orange from one of those medications), orchestrating the down-sizing from their big house to an apartment without his help ...
The phrase "temporarily abled" is bullshit because it implies that we're all going to suffer the same inevitable fate, and the truth is that we won't. Yes, age takes away functionality, but it is far more cruel to some than to others. I hope to God that I will take after my mother, who has physically slowed down at 77 but is still sharp as ever, and after her mother, who died at home at 93 of being old.
"Temporarily abled" is also bullshit because it is a scare tactic. If you want people to make choices other than the ones handed down by their primate forebears, try appeals to reason and to morals.
Posted by Josephine (# 3899) on
:
quote:
Originally posted by RuthW:
"Temporarily abled" is also bullshit because it is a scare tactic. If you want people to make choices other than the ones handed down by their primate forebears, try appeals to reason and to morals.
Those don't seem to have worked very well so far. What is it we ought to be doing differently? What kind of appeal could have kept Alex Spourdalakis alive?
Posted by lilBuddha (# 14333) on
:
My honest, sad answer is nothing. It will always be thus, we do what we can, reach out within our scope; but there will always be those for whom no reason works.
Posted by Porridge (# 15405) on
:
quote:
Originally posted by RuthW:
Some people aren't more able than others?
What this 'Harrison Bergeron' argument fails to acknowledge, though, is that all of us have innate limitations to begin with (and often acquire more as we move through life), while others experience additional limitations imposed from without; that some of these limitations are deemed "par for the course" while others are not; that many of us manage to compensate for our limitations (while others of us can't, won't, or don't); and that some of these compensations are socially acceptable and others aren't.
I'm sorry to hear of your parents' struggles. And what's happening with them is at the heart of the tragedy which produced this thread: what do we owe to one another? Do we owe this because of our limitations? Despite them? Should our limitations enter into such discussions at all? Most of all, who owes whatever it is that is owed? Should your mother (and/or her children or other family), on whose devotion strangers like me impose, be left to manage these without assistance?
quote:
Originally posted by RuthW:
The phrase "temporarily abled" is bullshit because it implies that we're all going to suffer the same inevitable fate, and the truth is that we won't.
Actually, we will: we all die.
The route that takes us there differs, and yes, these really do entail vastly different degrees of suffering, and that suffering may be as great or even greater for carers.
quote:
Originally posted by RuthW:
"Temporarily abled" is also bullshit because it is a scare tactic. If you want people to make choices other than the ones handed down by their primate forebears, try appeals to reason and to morals.
You say to-may-to tactic. I call it realism.
The problem, it seems to me, is that people are not making choices at all. We are running scared, trying to duck the reality that confronts us all, by pretending it's some other guy's problem. And if appeals to reason worked, we'd already be handling this national disgrace differently.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Porridge:
And if appeals to reason worked, we'd already be handling this national disgrace differently.
Yes! More tax dollars! That's always the answer, isn't it? We need to all rise up and make the guv'mint spend more tax money on our own particular 'special interest'. I'll support you in your outrage (Is Outrage!) if you'll support me in mine. Ah well…except maybe if we didn't go looking for non-existent weapons of mass destruction and such all, perhaps there would be more money to go around.
Posted by Porridge (# 15405) on
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Out of curiosity, how "special" is an interest that affects just about everybody?
Posted by Sine Nomine (# 66) on
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Who says it does? And even if it did there there's a huge list of things that 'affect just about everybody'. Personally I worry about neglected bridges falling into rivers. And whether social security will be there for me.
Remind me what you do for a living.
Posted by Marvin the Martian (# 4360) on
:
quote:
Originally posted by Porridge:
Out of curiosity, how "special" is an interest that affects just about everybody?
That's the thing - it doesn't. It affects those who have [a] condition and their loved ones/carers, but anyone who is in neither category is unaffected.
And no amount of "you'll be in that boat one day" scare tactics will change that.
Posted by RuthW (# 13) on
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Exactly. The problem is not that we all have the same problems and don't recognize it; neither is it that we will all sooner or later have the same problems and don't yet realize it. The problem is that as a people we have not learned to care about people whose problems we do not share. The folks variously advocating for more money for breast cancer research, AIDS treatment, education for autistic children, shelter for the homeless, etc etc ad infinitum are many of them only half a step ahead of those who don't care about anyone but themselves, because they care only about the problem that affects themselves or their family or their neighborhood.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by RuthW:
"Temporarily abled" is also bullshit because it is a scare tactic. If you want people to make choices other than the ones handed down by their primate forebears, try appeals to reason and to morals.
I've seen this term used a lot, but never as a scare tactic - more as a way to challenge the 'them and us' attitude that is so often prevalent. It can be quite effective. People's attitudes can be the most disabling thing of all. And people do change their attitudes despite something not affecting them personally - I've seen it happen. If someone is presented with a different frame of reference, it can make them think. After all, regardless of whether someone is affected personally by a disability, most people are going to encounter disabled people in their day-to-day life.
My only issue with the term 'temporarily able bodied' is it suggests that disability is purely to do with the body, and people easily forget that disability can also be of the mind.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by RuthW:
The folks variously advocating for more money for breast cancer research, AIDS treatment, education for autistic children, shelter for the homeless, etc etc ad infinitum are many of them only half a step ahead of those who don't care about anyone but themselves, because they care only about the problem that affects themselves or their family or their neighborhood.
I don't see that as necessarily a problem. It's how empathy works - people empathise with what they have experienced in some way. And people realistically can't advocate every cause there is. We are limited - in time, money, and the number of things our brain can focus on. It makes sense for people to advocate the causes they have some kind of experience with - they will be a better advocate because they can talk about the examples they know and have real empathy and passion towards it.
Posted by Porridge (# 15405) on
:
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Porridge:
Out of curiosity, how "special" is an interest that affects just about everybody?
That's the thing - it doesn't. It affects those who have [a] condition and their loved ones/carers, but anyone who is in neither category is unaffected.
And no amount of "you'll be in that boat one day" scare tactics will change that.
Maybe we also need to define "affect."
Here are people who are neither "disabled," by whatever the going definition is, nor necessarily loved ones or carers of same:
I am a clerk in a small neighborhood store. A customer approaches my counter and starts signing at me, and I have no idea what s/he wants or how to communicate with him/her.
I am a clerk in a small neighborhood store. A customer approaches my counter and starts talking to me, but his tongue is too big for his mouth (Down syndrome) and I can't understand him. I have no idea what he wants or how to communicate with him.
I'm waitstaff at a neighborhood café. A customer sits in my station, but I can't make out what s/he wants.
I am a lifeguard at the town swimming pool. Is that guy in the water flailing around because he's drowning, or is he just flailing around? Should I help him, stop him, or ignore him?
I'm a cop on the beat. Is that guy carrying on in the street on drugs, mentally ill, developmentally disabled, or criminal, or some combination of the above? If I make the wrong call, bad things could happen not only to him, but to me.
I'm a cab driver who doesn't know how to deal with his fare's wheelchair, nor whether or how to assist the fare to transfer into my vehicle.
I work at a rental agency where we're advertising a property, and a caller wants to know if it's accessible. Of course, I explain, it's right on a bus line and the apartment's only two steps up from the street.
I'm a college lecturer who keeps showing important info on PowerPoint diagrams which mean nothing to my blind student.
I'm a subway token booth attendant who thinks I can make the deaf passenger understand my directions if I just shout louder.
Posted by RuthW (# 13) on
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quote:
Originally posted by Fineline:
I've seen this term used a lot, but never as a scare tactic - more as a way to challenge the 'them and us' attitude that is so often prevalent. It can be quite effective.
It isn't working on Marvin, Sine or me. For me it doesn't challenge "them vs. us" attitudes so much as it doesn't face the reality of them and the reality from which those attitudes spring, which is that we don't all have the same levels of ability or face the same challenges or whatever you want to call it.
quote:
We are limited - in time, money, and the number of things our brain can focus on. It makes sense for people to advocate the causes they have some kind of experience with - they will be a better advocate because they can talk about the examples they know and have real empathy and passion towards it.
Who are these advocates listening to? If everybody is so busy advocating for the thing they care about because they are intimately affected by it, no one is listening and learning to care about things that don't intimately affect them. I am never going to have the feelings about Alex Spourdalakis' death that Josephine has. She's spent years advocating for her own children's needs, which aren't well met by the systems we have, while I don't have children at all and all the kids I know go to regular schools and are doing just fine in them. And try as I might, my imagination is only going to go so far. I really can't imagine what his mother went through in trying to care for him. I am never going to be in that position. I have it easy with my folks, too, as they are relatively affluent and can pay for all the things they're going to need as my dad's condition worsens. So give me a reason to care about what happens to people who face things I will never face. Telling people who will never deal with a child like Alex Spourdalakis that they should change their views because they're "temporarily abled" is useless, because the vast majority of them know that they will never be diapering a 14-year-old.
Maybe someday things will really suck for me, but maybe they won't. Old people don't all have the same situations. In the meantime, being threatened with the bogey-man of being "temporarily abled" isn't doing a damn thing to influence my views about public services (which are socialist, by the way). "Temporarily abled" implies that sooner or later, in the end, life is fair -- which is an enormous lie.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by RuthW:
"Temporarily abled" implies that sooner or later, in the end, life is fair -- which is an enormous lie.
Yes. Thank-you. That's it exactly. I wasn't able to form the words.
(I've been sitting here thinking about my high school senior English teacher who spent an awful lot of time talking to us about 'the human condition'.)
Posted by Porridge (# 15405) on
:
quote:
Originally posted by RuthW:
"Temporarily abled" implies that sooner or later, in the end, life is fair -- which is an enormous lie.
Life is fair? I agree that's an enormous lie. I think "TAB" says that life, sooner or later, for pretty much everybody, is a lopsided crap shoot, with us on the losing end (albeit in a wide variety of very different ways). It's a way to acknowledge, "I could be in those shoes" -- or that chair, or what have you. It's a secular version of "There but for the grace of God go I."
There's absolutely nothing fair about that. There is no equality within our separate sufferings, either. Neither is there much to be gained from measuring these against one another.
Once upon a time, people in my field though community placement held the answers. Stop locking people away and segregating them, and communities would eventually take the funny-acting, funny-looking people in and accept them -- the "assimilating newcomers" model.
It hasn't worked (and in my state, taxpayers spent vast amounts of taxpayer money funding two parallel systems over more than a decade to accomplish this in a reasonably gradual way). I don't know what the bigwigs in my field learned from that. I learned you can't buy acceptance. You can't impose or legislate acceptance.
Beyond that, I'm stuck.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Porridge:
quote:
Originally posted by RuthW:
"Temporarily abled" implies that sooner or later, in the end, life is fair -- which is an enormous lie.
Life is fair? I agree that's an enormous lie. I think "TAB" says that life, sooner or later, for pretty much everybody, is a lopsided crap shoot, with us on the losing end (albeit in a wide variety of very different ways). It's a way to acknowledge, "I could be in those shoes" -- or that chair, or what have you. It's a secular version of "There but for the grace of God go I."
“You fall out of your mother's womb, you crawl across open country under fire, and drop into your grave.” - Quentin Crisp
Posted by Fineline (# 12143) on
:
quote:
Originally posted by RuthW:
quote:
Originally posted by Fineline:
I've seen this term used a lot, but never as a scare tactic - more as a way to challenge the 'them and us' attitude that is so often prevalent. It can be quite effective.
It isn't working on Marvin, Sine or me. For me it doesn't challenge "them vs. us" attitudes so much as it doesn't face the reality of them and the reality from which those attitudes spring, which is that we don't all have the same levels of ability or face the same challenges or whatever you want to call it.
Maybe it doesn't need to 'work' on you, because maybe you don't have the 'them and us' attitude to be begin with.
But I'm not sure how the term suggests people don't have different levels of ability. To me it simply suggests that someone is currently fortunate enough to have an able body, but that this won't necessarily always be the case. It is a reminder of the uncertainty of life. Perhaps 'currently able bodied' would be better? But I see everything in this life as temporary. When I have worked in care homes with elderly people, I have felt very aware of how temporary my able body is.
quote:
Originally posted by RuthW:
quote:
Originally posted by Fineline:
We are limited - in time, money, and the number of things our brain can focus on. It makes sense for people to advocate the causes they have some kind of experience with - they will be a better advocate because they can talk about the examples they know and have real empathy and passion towards it.
Who are these advocates listening to? If everybody is so busy advocating for the thing they care about because they are intimately affected by it, no one is listening and learning to care about things that don't intimately affect them. I am never going to have the feelings about Alex Spourdalakis' death that Josephine has. She's spent years advocating for her own children's needs, which aren't well met by the systems we have, while I don't have children at all and all the kids I know go to regular schools and are doing just fine in them. And try as I might, my imagination is only going to go so far. I really can't imagine what his mother went through in trying to care for him. I am never going to be in that position. I have it easy with my folks, too, as they are relatively affluent and can pay for all the things they're going to need as my dad's condition worsens. So give me a reason to care about what happens to people who face things I will never face. Telling people who will never deal with a child like Alex Spourdalakis that they should change their views because they're "temporarily abled" is useless, because the vast majority of them know that they will never be diapering a 14-year-old. .
I'm kind of confused what you're arguing here. Why would the fact that people advocate mean they don't listen to others?
Personally, having an understanding of what it's like to be on the autism spectrum, to struggle with certain things that others take for granted, like recognising faces and understanding social interaction, and to experience people's mockery, prejudice and rudeness as a result has given me a bit of an insight into what it's like for people with other disabilities that I don't have, and also what it's like in general to be part of a group that is not the default. Equally, having people make assumptions about me based on stereotypes, and based on their own experiences rather than asking about mine, has made me aware that I can't ever assume to fully know what something is like for someone else, so I must always have an open mind. I can of course never know exactly what it's like to be someone that I'm not. And there will always be limitations to my empathy, and blind spots - same with everyone. But to me that isn't a dreadful thing. That's just life.
I can't give you a reason to care about anyone. Why should I? If you don't care about certain people who are experiencing things that you haven't experienced, that's your lookout. It's not for me to give you reasons to care. I'm simply saying that the term 'temporarily able bodied' has been effective for some people (not everyone - of course not everyone) - often people who had simplistic 'them and us' attitudes previously. But of course it is more effective within a whole dialogue about disability, where people have open minds and are trying to understand. Not people who say 'I don't care - give me a reason to care.' It's not about people saying 'You have to care because you're temporarily abled' - I've never come across anyone saying that. It's not about making people care - it's about giving another perspective, to people who are open to another perspective.
Generally caring begins by experiencing something yourself, and then seeing how it extends to other situations. You seem to see that as terribly selfish - I simply see it as how the human mind is able to process things. Not just with regard to empathy, but with regard to understanding anything, like maths or physics. It needs to be related to things you have previously begun to understand through them being meaningful to you. That's why Jesus explained spiritual things by using parables relating to everyday things that people could relate to.
Posted by Twilight (# 2832) on
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Jesus also just flat out said, "Feed the poor." I think waiting for people to help based on their own ability to feel empathy for that particular problem may be the long way around. I think it might be better if we just coldly said, old, sick, disabled people need health care, shelter and food, and those of us who are able to work should pool together to pay for it. (I'm trying to avoid the "t" word.)
We can say "There but fortune go I," ( I believe it's more fortune than God's grace which I like to think is more evenly distributed) but that doesn't buy anyone's medication.
Every year at this time my church goes nuts with the Relay for Life cancer drive. Every year at the same time we have the March of Dimes and I actually don't think it's possible to raise breast cancer awareness any higher than it already is. I once saw a list of diseases in a graph showing the amount of annual charity money collected per person with the disease. Some conditions collected thousands per person, my own concern, schizophrenia, had $14 collected annually per person -- less than for dental cavities. There is no fairness in any of this and I don't think changing the wording is going to make much difference. Those March of Dimes babies are always going to open more pocket books than those scary, homeless schizophrenic men.
Posted by RuthW (# 13) on
:
quote:
Originally posted by Porridge:
I think "TAB" says that life, sooner or later, for pretty much everybody, is a lopsided crap shoot, with us on the losing end (albeit in a wide variety of very different ways). It's a way to acknowledge, "I could be in those shoes" -- or that chair, or what have you. It's a secular version of "There but for the grace of God go I."
That's not what it communicates to me. The only great equalizer is death. What you put into parentheses is important, I think -- the wide variety of situations prior to death is why "temporarily able-bodied" is a huge gloss over reality. There are shoes I will never, ever walk in. Saying "there but for the grace of God go I" is equally bullshit. God didn't reach out a finger and bless me with good health and then look at Alex Spourdalakis and say "sucks to be you."
quote:
Originally posted by Fineline:
I can't give you a reason to care about anyone. Why should I? If you don't care about certain people who are experiencing things that you haven't experienced, that's your lookout.
I'm with Twilight. We should support public services for people who need them because it's the right thing to do. It's actually not my lookout if I don't care about some people -- they'll suffer in ways that I don't even know about.
Look, one way or another, the full humanity of Alex Spourdalakis and the homeless guy sleeping in front of the gate at my job and countless other people needs to be acknowledged and provided for. Saying "hey, that could be you!" is not going to help make that happen, because it's demonstrably not them, and most people aren't going to think in those kinds of hypothetical terms. Lots of people can't even get their shit together to save money for their own old age because it seems so unreal to them, never mind wrap their minds around other potential problems -- and that's for themselves. Witness the shock people feel when disaster does strike: "I never thought it could happen to me." It's silly to think "it could be you" is going to make a lot of headway when you're talking about situations like that of the Spourdalakis family.
The appeal to emotion is far too limited because our empathy is for the most part too limited. I think we've got to find ways to get ourselves to recognize humanity in people we don't know, people we don't understand, people we don't empathize with. That whole thing about walking a mile in someone else's shoes sounds great, but I can only do that with a limited number of people -- everyone else I'm going to somehow just have to find a way to say, yes, they're human, yes, they have needs, and yes, they deserve all the same basic things I want for me and the people I do know, love, understand.
Posted by Porridge (# 15405) on
:
quote:
Originally posted by RuthW:
Telling people who will never deal with a child like Alex Spourdalakis that they should change their views because they're "temporarily abled" is useless, because the vast majority of them know that they will never be diapering a 14-year-old.
I (maybe) see what you're getting at, but I don't think the messages link up in that way -- at least, for me they don't.
You're right; nobody's going to give a crap about people like my clients or like Alex on the premise that "Gosh, I might crash my motorcycle next week while not wearing my helmet (I live in a state where you aren't required to wear one and no, don't get me started) and end up with a traumatic brain injury and looking/acting like that."
First, people who seriously believe they're likely to crash probably aren't zipping around on motorcycles, or if they do take that seriously, they wear helmets.
Second, most of us see folks like Alex as "not like me." That, right there, is the nut that holds the wheel, and it's not even a quarter-turn from there to "not quite human." And we all know what happens to those we classify as "not quite human."
Years ago, when my state was closing down its "school" (so-called) for the "retarded" (original name), I was a complaints investigator, combing through the records of the school's clients for evidence to support their complaints.
That's where I discovered that the "school's" dentist, employed there for 7 years, never used anesthesia because his patients, according to him, were incapable of feeling pain.
I don't know how much Novacaine costs, but he must have saved the "school" a bundle.
Just think about that: That dentist, in an institution which, at maximum population, held some 1500 people, infants to geriatric folks, all being treated for their dental needs by that fucking sadist.
There was a lot more of that nature in those files.
It took the agency I then worked for about 4 years to work through the "school" cases we had, and my nightmares didn't stop for some 3 years after that.
The TAB thing, from my perspective, is just a reminder that we're all vulnerable. As to changing people's views of folks like Alex, maybe what's needed is more light shone on things like that dentist.
And more public attention must be paid to the plights and trials of families like Alex's.
Deep down, wrong as I might be, I believe Alex's death was preventable. If I lived in that state and knew the systems there, I'd be digging. I'd want to write a book, I'd want to unravel the story of his life, and his carers' idee fixe about his condition. I'd want to talk to the local school, everybody who ever spoke to anyone from that family. Somewhere, somehow, there was a moment (or even several) where the course their lives were on could have turned a different corner and led to an Alex still alive and his family with a workable, tolerable situation.
That's what might change people's views.
Sine mentioned the human condition, and he was right: we all suffer, one way or another; who escapes?
We are not, however, required to inflict that suffering on one another.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Twilight:
Jesus also just flat out said, "Feed the poor." I think waiting for people to help based on their own ability to feel empathy for that particular problem may be the long way around. I think it might be better if we just coldly said, old, sick, disabled people need health care, shelter and food, and those of us who are able to work should pool together to pay for it. (I'm trying to avoid the "t" word.)
This I agree with. If a person is motivated to follow and obey Jesus, then this will motivate them to do what Jesus asks, regardless of whether they personally feel any empathy. Of course, if they then do it, they are likely to develop some kind of empathy, because when you are helping someone practically, you get to know them, and when you get to know someone and talk with them, you understand them more.
Of course, not everyone is motivated to follow and obey Jesus, so this won't work as a motivating factor for everyone either. People are motivated by a whole jumble of complex and often contradictory things.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by RuthW:
Look, one way or another, the full humanity of Alex Spourdalakis and the homeless guy sleeping in front of the gate at my job and countless other people needs to be acknowledged and provided for. Saying "hey, that could be you!" is not going to help make that happen, because it's demonstrably not them, and most people aren't going to think in those kinds of hypothetical terms. Lots of people can't even get their shit together to save money for their own old age because it seems so unreal to them, never mind wrap their minds around other potential problems -- and that's for themselves. Witness the shock people feel when disaster does strike: "I never thought it could happen to me." It's silly to think "it could be you" is going to make a lot of headway when you're talking about situations like that of the Spourdalakis family.
The appeal to emotion is far too limited because our empathy is for the most part too limited. I think we've got to find ways to get ourselves to recognize humanity in people we don't know, people we don't understand, people we don't empathize with. That whole thing about walking a mile in someone else's shoes sounds great, but I can only do that with a limited number of people -- everyone else I'm going to somehow just have to find a way to say, yes, they're human, yes, they have needs, and yes, they deserve all the same basic things I want for me and the people I do know, love, understand.
Ah, okay, so you were arguing that people don't get motivated by empathy, because that is not how you get motivated? Actually, emotional appeals don't tend to do much for me either - I am motivated much more by reason and conscience, and emotional appeals tend to irritate me.
But that doesn't make me dislike the term 'temporarily able bodied', because I don't see it as an emotional appeal - just a statement of fact, and a different perspective from what a lot of people naturally have. It's never made me feel scared or emotional in any way.
Also, the fact that I don't get motivated by emotional appeals doesn't, to me, mean that no one does. I observe different people have different personalities - and some make decisions based on emotions, and others based on reason. From what I observe of people's donations to charity, emotional appeal is a big motivator - breast cancer, for instance, gets a lot more support than testicular cancer. Women are motivated to see it as a women's solidarity thing, with a pretty pink ribbon, and women's mums might have died of it, which makes more women aware that their own mums could die of it, etc.
Also, a lot more money is raised for children with autism than for adults with autism. Because children with autism are seen as cute. Of course the appeal to emotion is limited, but for many people it is their main motivating factor, and I don't think that is wrong. God made us all with different personalities. And although people's empathy is of course limited to what they know, it can be expanded as their knowledge grows - not just their personal knowledge, but their knowledge of people they meet, and their ability to make connections with their own experiences and that of others, even those who at first glance may seem very different from themselves.
Actually, the appeal to reason is limited too - because people's reason is limited, and people are full of double standards, and selfish motivations, and rationalisation. I'd simply say that no one's motivations are ever pure, and they are always limited, but still, God is able to do good things through us anyway, if we let him.
As for my use of 'that's your lookout', I meant that is your responsibility what you do - that is, that it it is up to you. That is what 'your lookout' means. I had to check, because I got worried I was misusing a non-literal expression for a moment! But I used it correctly. It doesn't necessarily mean that you know the effects you have on others. Most people don't.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Fineline:
But that doesn't make me dislike the term 'temporarily able bodied', because I don't see it as an emotional appeal - just a statement of fact
A statement of fact or a statement of possibility?
I know plenty of people who've been quite 'able-bodied' up into their 70s & even into their 80s. Maybe not like they were at 25 but not 'disabled' either.
Posted by Sine Nomine (# 66) on
:
(Actually 'temporarily able bodied' is a propaganda phrase exactly like 'the unborn' or 'marriage equality' meant to sway the emotions or opinion of the listener. Nothing wrong with trying to do that – we all have agendas to promote - but best to be clear about it and not dress it up in the cloak of righteousness.)
Posted by Yorick (# 12169) on
:
Myeah, but it doesn't really work, Sine. Only the other day, I said to a young lady, 'Goodness, your tits look amazing in that top, but I only say this because I want to put my willy in you', and she didn't even have sex with me.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Sine Nomine:
quote:
Originally posted by Fineline:
But that doesn't make me dislike the term 'temporarily able bodied', because I don't see it as an emotional appeal - just a statement of fact
A statement of fact or a statement of possibility?
I know plenty of people who've been quite 'able-bodied' up into their 70s & even into their 80s. Maybe not like they were at 25 but not 'disabled' either.
Fact in that I am at the moment able bodied. And that my body won't last forever. As I said earlier, maybe some would prefer 'currently able bodied'? That's all we can say. The body isn't permanent.
Posted by Sine Nomine (# 66) on
:
You've totally lost me, Yorick, but I'm ok with that.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Fineline:
quote:
Originally posted by Sine Nomine:
quote:
Originally posted by Fineline:
But that doesn't make me dislike the term 'temporarily able bodied', because I don't see it as an emotional appeal - just a statement of fact
A statement of fact or a statement of possibility?
I know plenty of people who've been quite 'able-bodied' up into their 70s & even into their 80s. Maybe not like they were at 25 but not 'disabled' either.
Fact in that I am at the moment able bodied. And that my body won't last forever. As I said earlier, maybe some would prefer 'currently able bodied'? That's all we can say. The body isn't permanent.
Maybe we should just say 'currently alive'.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Sine Nomine:
(Actually 'temporarily able bodied' is a propaganda phrase exactly like 'the unborn' or 'marriage equality' meant to sway the emotions or opinion of the listener. Nothing wrong with trying to do that – we all have agendas to promote - but best to be clear about it and not dress it up in the cloak of righteousness.)
Yes, it was coined and is used for effect, but not necessarily emotional effect, as far as I'm aware. Not necessarily to 'scare' people, as people have been saying. I've never experienced it used that way, and I have been quite involved in disability rights. I've seen it used to challenge the 'them and us' attitude to disability. It gives a person a different perspective that they might not have thought of before. Rather like the slogan 'People are gay. Get over it.' Like all slogans, it won't be effective or popular with everyone, but it will have an effect on some.
I'm not sure what you mean by dressing it up in a 'cloak of righteousness'. That makes it sound like it's something bad being disguised as something good. If people are trying to promote equal rights, and trying different ways of trying to change people's perspectives, some may see that as a positive, good thing. Cambridge University have been doing it recently with women's rights.
Posted by Yorick (# 12169) on
:
quote:
Originally posted by Sine Nomine:
You've totally lost me, Yorick, but I'm ok with that.
Well it's just that you said we should be clear about the agendas that we're trying to promote when we say stuff. I was pointing out that this approach can in fact result in the very opposite outcome to the one you want.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Sine Nomine:
Maybe we should just say 'currently alive'.
You could say that too. That is a good reminder of our mortality. It depends what perspective and focus you are taking. There is the focus that we are mortal, and there is also the focus that while we are alive, we cannot take our able-bodied status for granted. The latter is the perspective that disability activists want people to be aware of.
Posted by Niteowl (# 15841) on
:
quote:
Originally posted by Sine Nomine:
(Actually 'temporarily able bodied' is a propaganda phrase exactly like 'the unborn' or 'marriage equality' meant to sway the emotions or opinion of the listener. Nothing wrong with trying to do that – we all have agendas to promote - but best to be clear about it and not dress it up in the cloak of righteousness.)
Actually, no it's not. It's meant to make people think, because no one has any guarantee of not becoming disabled through accident or crime at any time and the vast majority of people do become disabled in their elderly years - it may be arthritis in their 50's or 60's or stroke or disease of some sort then or after. The problem is too many people think it won't ever happen to them, thus enabling the asinine "us vs. them" thinking.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Niteowl:
quote:
Originally posted by Sine Nomine:
(Actually 'temporarily able bodied' is a propaganda phrase exactly like 'the unborn' or 'marriage equality' meant to sway the emotions or opinion of the listener. Nothing wrong with trying to do that – we all have agendas to promote - but best to be clear about it and not dress it up in the cloak of righteousness.)
Actually, no it's not. It's meant to make people think, because no one has any guarantee of not becoming disabled
Actually yes it is. Because just like 'the unborn' or 'marriage equality' it is meant to produce a specific emotional response – one that you don't get from 'fetus' or 'gay marriage'.
(Personally I have an 88 year old father who's confined to an electric scooter. I'm grateful every day that I get up and am not in pain and can go to the gym and work out. I certainly realize it's a gift and that it's not open ended. But once again that is just a part of the human condition as far as I'm concerned. The 7 ages of Man, etc.)
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Yorick:
quote:
Originally posted by Sine Nomine:
You've totally lost me, Yorick, but I'm ok with that.
Well it's just that you said we should be clear about the agendas that we're trying to promote when we say stuff. I was pointing out that this approach can in fact result in the very opposite outcome to the one you want.
NO!!!! You need to be clear about your own agenda. That doesn't mean you have to shout it from the rooftop to others. Please go immediately to the dating thread in All Saints and ask for their help!
Posted by Marvin the Martian (# 4360) on
:
quote:
Originally posted by Fineline:
There is the focus that we are mortal, and there is also the focus that while we are alive, we cannot take our able-bodied status for granted. The latter is the perspective that disability activists want people to be aware of.
Yes, so that you can scare them into giving money to your cause on the off chance that they'll need it themselves some day.
Posted by Fineline (# 12143) on
:
Something else occurs to me. When people are helping people purely because it is 'the right thing to do', because they believe God wants them to, etc., it can actually be very patronising, self-righeous, and full of a 'them and us' attitude. Not intentionally, of course - but it is very easy for people who are full of good intentions to have an attitude of 'Here am I, doing good, helping these poor, unfortunate people.'
And people pick up on such attitudes and can feel ostracised and marginalised by them. The 'them and us' attitude is very disempowering.
It makes me sad that disability equality should be so lagging behind racial, gender and sexuality equality - whose campaigners have all had various slogans to make people think and to challenge their prejudices and 'them and us' attitudes. All these slogans could probably be pulled apart and criticised, as anything can be, but they have done good, and resulted in a lot of people changing their attitudes. And here disability equality campaigners have one slogan so far. It's easy to sit on the sidelines and criticise - just as people jeered and criticised some of the attempts of feminists and gay rights activists. But I see it as a positive thing, and I look forward to more slogans and campaigns.
Of course people don't like to think of the vulnerability of their able bodied status - the fact that they could lose their ability to walk, to talk, etc. And perhaps that is why disability equality is lagging behind so much - perhaps the concept of one's own vulnerability is the thing people most want to deny, and are most motivated to create a 'them and us' attitude to avoid. But if change has happened around people's attitudes to people of different races, to women, and to gay people, I don't see why it can't happen with people with disabilities.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Fineline:
There is the focus that we are mortal, and there is also the focus that while we are alive, we cannot take our able-bodied status for granted. The latter is the perspective that disability activists want people to be aware of.
Yes, so that you can scare them into giving money to your cause on the off chance that they'll need it themselves some day.
It actually isn't all about money. It's about awareness, and being respected as equal human beings.
Posted by Sine Nomine (# 66) on
:
(The last time I sprained my ankle running I was reminded of how little a physical impairment it takes to make life difficult.)
Posted by Niteowl (# 15841) on
:
quote:
Originally posted by Sine Nomine:
quote:
Originally posted by Niteowl:
quote:
Originally posted by Sine Nomine:
(Actually 'temporarily able bodied' is a propaganda phrase exactly like 'the unborn' or 'marriage equality' meant to sway the emotions or opinion of the listener. Nothing wrong with trying to do that – we all have agendas to promote - but best to be clear about it and not dress it up in the cloak of righteousness.)
Actually, no it's not. It's meant to make people think, because no one has any guarantee of not becoming disabled
Actually yes it is. Because just like 'the unborn' or 'marriage equality' it is meant to produce a specific emotional response – one that you don't get from 'fetus' or 'gay marriage'.
Actually, I think you'll find the majority of those of us who are disabled would prefer people think rationally instead of responding emotionally. It's the emotion of fear of becoming disabled that is behind almost all of the prejudice we face.
Posted by Niteowl (# 15841) on
:
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Fineline:
There is the focus that we are mortal, and there is also the focus that while we are alive, we cannot take our able-bodied status for granted. The latter is the perspective that disability activists want people to be aware of.
Yes, so that you can scare them into giving money to your cause on the off chance that they'll need it themselves some day.
As has been stated a couple of times already, it's not fear we want people to have as that is behind most of the prejudice we face. Fineline is correct in.
[ 20. June 2013, 15:04: Message edited by: Niteowl ]
Posted by Marvin the Martian (# 4360) on
:
quote:
Originally posted by Fineline:
It actually isn't all about money.
So all those changes and accommodations and extra facilities the advocacy groups are demanding come for free?
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Niteowl:
Actually, I think you'll find the majority of those of us who are disabled would prefer people think rationally instead of responding emotionally. It's the emotion of fear of becoming disabled that is behind almost all of the prejudice we face.
This.
I think it must be fear that makes people opposed to the concept of 'temporarily abled' and builds up the 'them and us' attitudes. The people who've accepted it as a term are not scared by it.
Besides, before this sort of campaigning by disabled people, the campaigners were non-disabled people trying to elicit the emotion of pity. I think the vast majority of disabled people don't want to be pitied. That is the ultimate 'them and us' attitude. Whether it's an emotion or rationality, I'd far rather people had the understanding that I'm a human being like them. 'Temporarily abled' is the first term to actually bridge the distance between 'them' and 'us'.
Posted by Sine Nomine (# 66) on
:
Hey! Years ago I dated a guy who had polio. His legs weren't much but his shoulders and arms were fabulous.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Fineline:
It actually isn't all about money.
So all those changes and accommodations and extra facilities the advocacy groups are demanding come for free?
In this case it's normally about allocation of funds. Whether the funds should only go for those who are the able-bodied majority, or whether actually everyone should have access to community activities, etc. Rather like the idea that women should have the right to vote, that black people should be free to go to the same schools as white people and have the same pay as white people, etc.
My point was that it's not all about money. It is also very much about attitude. That is the main thing. Changing society's attitudes so that certain people aren't seen as inferior and not worth certain human rights. As has been done with other minority groups. Personally, I think this is very important, and I can't really understand why people are griping about being reminded that their body won't necessarily always be able bodied, when that is simply a fact of life, and a very good reminder that disabled people are not a sub-human group totally exclusive from able-bodied people.
Posted by Fineline (# 12143) on
:
Incidentally, are any of the people on this thread who are arguing against disabled people campaigning for equal rights by using a phrase that might possibly elicit emotion in people and remind them of their own vulnerability disabled themselves?
Posted by Sine Nomine (# 66) on
:
What? Are disabled people not allowed to vote, leave their property to whom they choose, or to marry those they love? I had no idea! This discrimination must be stopped immediately! It's outrageous.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Sine Nomine:
What? Are disabled people not allowed to vote, leave their property to whom they choose, or to marry those they love? I had no idea! This discrimination must be stopped immediately! It's outrageous.
Yes, those things often happen. It can depend on whether the disabled people are given support, what support they are given, who their care workers are, how accessible the buildings are, whether they are enabled to communicate if they are unable to talk, etc. Yes, it is outrageous. How do you propose stopping it?
Posted by Sine Nomine (# 66) on
:
Get the Guv'mint to spend more money obviously. That's always the answer. And to do that you have to lobby. And to lobby successfully you need a catchy slogan…
Posted by Marvin the Martian (# 4360) on
:
quote:
Originally posted by Fineline:
Rather like the idea that women should have the right to vote, that black people should be free to go to the same schools as white people and have the same pay as white people, etc.
Those things didn't require any new facilities to be built (and therefore funded), just that what already existed be made available to everyone. To put it crudely: giving women the vote didn't mean every polling station suddenly had to make sure it had step-free access, someone on hand who could sign, braille signage and so forth. These things all cost money, whereas not caring about the gender/race of anyone who comes through the door costs nothing.
Posted by Niteowl (# 15841) on
:
quote:
Originally posted by Sine Nomine:
What? Are disabled people not allowed to vote, leave their property to whom they choose, or to marry those they love? I had no idea! This discrimination must be stopped immediately! It's outrageous.
I've been told point blank in a job interview that I wasn't going to be hired because I was disabled, but that if I said anything to anyone outside of the interview they'd deny it. How is that not discrimination? I've known of cases where Child Protective Services was going to remove children from a home, not because they child was being neglected or abuse, but because the social worker didn't think a disabled person could be a good parent. Don't even think of telling me disabled people aren't discriminated against.
Posted by Niteowl (# 15841) on
:
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Fineline:
Rather like the idea that women should have the right to vote, that black people should be free to go to the same schools as white people and have the same pay as white people, etc.
Those things didn't require any new facilities to be built (and therefore funded), just that what already existed be made available to everyone. To put it crudely: giving women the vote didn't mean every polling station suddenly had to make sure it had step-free access, someone on hand who could sign, braille signage and so forth. These things all cost money, whereas not caring about the gender/race of anyone who comes through the door costs nothing.
If my tax dollars are going towards those public facilities I think they should be accessible so I can use them. Don't you? Not to mention, tax monies have been spent to make voting places/booths accessible.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Sine Nomine:
Get the Guv'mint to spend more money obviously. That's always the answer. And to do that you have to lobby. And to lobby successfully you need a catchy slogan…
![[Razz]](tongue.gif)
It really isn't all about money. Awareness goes a long, long way. Awareness that people who can't talk are often still able to think and reason. Awareness that one shouldn't assume that a person with a learning disability won't be interested in voting. Awareness of the importance of informing people of their choices, and using communication that they can understand. Awareness that just because someone has, say, Down Syndrome, that doesn't automatically mean they don't have the capacity to love someone in a sexual way.
There are so many cases where the money is there and the awareness isn't.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Fineline:
Rather like the idea that women should have the right to vote, that black people should be free to go to the same schools as white people and have the same pay as white people, etc.
Those things didn't require any new facilities to be built (and therefore funded), just that what already existed be made available to everyone. To put it crudely: giving women the vote didn't mean every polling station suddenly had to make sure it had step-free access, someone on hand who could sign, braille signage and so forth. These things all cost money, whereas not caring about the gender/race of anyone who comes through the door costs nothing.
It's not quite as simple as that. If double the amount of people are voting, you either need double the amount of staff, or the staff need to work double the hours. If black people are given the same pay as white people, then that pay has to come from somewhere. Giving people equal rights where they didn't have them before generally ends up costing money.
But why is money seen as the big deal here? In my experience, people more happily part with their money than change their attitudes. Money is external to you, whereas your attitudes are part of who you are.
Posted by Sine Nomine (# 66) on
:
quote:
Originally posted by Niteowl:
Don't even think of telling me disabled people aren't discriminated against.
Don't feel like the Lone Ranger.
Posted by Sine Nomine (# 66) on
:
Shit. I just realized I'm getting argumentative for the sake of being contrary. Better stop.
Posted by Twilight (# 2832) on
:
quote:
Originally posted by Fineline:
I think it must be fear that makes people opposed to the concept of 'temporarily abled' and builds up the 'them and us' attitudes. The people who've accepted it as a term are not scared by it.
'Temporarily abled' is the first term to actually bridge the distance between 'them' and 'us'.
I understand everything you're saying, Fineline, I'm just not at all sure the term is having the effect you think it is. Are non-disabled really hearing "temporarily abled" and feeling afraid? Are they moved to greater empathy by it? Maybe many are, but I think quite a few people may hear it as a muttered threat. It sounds a bit like ill-wishing to me. Sort of like the person who can't walk is saying, "Sure you're strutting around carelessly now but you just might get hit by a truck tomorrow and then we'll see how much you wish you'd voted for the new wheel chair ramp, you temporarily abled moron."
I was wheelchair confined for about six months a few years ago and then with a walker for more months and I was appalled at the number of places in town that were inaccessible. There's nothing like seeing something from the other persons view point to increase awareness but the "This could be you!" sound of temporarily abled doesn't do a thing to close the them vs us distance to my ears.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Twilight:
I understand everything you're saying, Fineline, I'm just not at all sure the term is having the effect you think it is. Are non-disabled really hearing "temporarily abled" and feeling afraid? Are they moved to greater empathy by it? Maybe many are, but I think quite a few people may hear it as a muttered threat. It sounds a bit like ill-wishing to me. Sort of like the person who can't walk is saying, "Sure you're strutting around carelessly now but you just might get hit by a truck tomorrow and then we'll see how much you wish you'd voted for the new wheel chair ramp, you temporarily abled moron."
Well, I wasn't actually thinking that it was having the effect of scaring people or moving them to greater empathy. Others were saying it was scaring people, and I was disagreeing. I see it more as a simple statement, with no particular emotional appeal, but just presenting a perspective that some might not have thought about - that there is not such a great difference between able bodied and disabled people. That anyone can become disabled. Actual empathy comes from experiencing something oneself, as you say.
It never even occurred to me to see it as a threat. I've never interpreted it that way. But I tend to take things at face value, rather than reading emotional things into them. And as a statement of fact, 'temporarily able bodied' seems accurate to me. But I understand that people are different and different people interpret things differently, so I can accept that some may interpret it that way.
I would question whether that was intended though - the message of disability activists tends to be that it's not a dreadful thing to have a disability. You adapt, you become organised at working round it. You want respect, to be treated like an equal - not pity. A lot of disability activists talk about the idea that society is what disables people - that people's attitudes disable people more than their disability does. So if people are horrified at the idea of becoming disabled, this is not surely not what most disabled activists want - it increases the 'them and us' divide.
If it were possible that a person could become gay overnight, you can imagine that the gay activists would draw people's attention to this possibility. Not as a threat, as if this were the most dreadful thing that could happen to someone - but as a way of getting people to realise that they are not so different. That this could happen to anyone. As it is, they sometimes draw people's attention to the fact that straight people can have gay children - not as a threat (because that would mean having gay children were the most dreadful thing ever) but as a reality check for people who have a 'them and us' attitude to gay people.
When I worked in mental health, attention was often drawn to the fact that anyone could become mentally ill - that, for instance, a woman who has never been mentally ill can have a baby and then get post-natal psychosis. That it's possible for anyone. This wasn't said to scare people - it was to stop the stigma. To make people realise we are all the same - that anyone can become mentally ill.
Perhaps if people are reading the mention of the possibility of anyone becoming disabled as a terrible threat, this says more about their attitude than about the people saying it.
Posted by Fineline (# 12143) on
:
I think too that a lot of people felt threatened when women started fighting for women's rights, and when gay people started advocating for gay rights. That some people feel threatened is perhaps something to be expected. Hopefully this will lessen as time goes on, and people's attitudes change.
Posted by Niteowl (# 15841) on
:
quote:
Originally posted by Fineline:
I would question whether that was intended though - the message of disability activists tends to be that it's not a dreadful thing to have a disability. You adapt, you become organised at working round it. You want respect, to be treated like an equal - not pity. A lot of disability activists talk about the idea that society is what disables people - that people's attitudes disable people more than their disability does. So if people are horrified at the idea of becoming disabled, this is not surely not what most disabled activists want - it increases the 'them and us' divide.
This is the absolute truth.
Posted by Twilight (# 2832) on
:
quote:
Originally posted by Fineline:
I would question whether that was intended though - the message of disability activists tends to be that it's not a dreadful thing to have a disability.
Perhaps if people are reading the mention of the possibility of anyone becoming disabled as a terrible threat, this says more about their attitude than about the people saying it.
Oh I agree. I'm just pointing out that for a segment of the population the phrase may be having the opposite effect of what was originally intended and that may have to do with other conversations that are currently going on around us. Sine was not the only one who was reminded of the abortion debate and how embryos suddenly became babies for one side of the argument. "Temporarily abled," also makes me think of the "check your privilege" conversation going on in Purg right now. How these sorts of phrases are spoken is as varied as how they are received. One person's gentle reminder may sound like an angry accusation coming from another. It even says something about the (not-disabled or white) person who is sure that the message is meant for everyone else but certainly not needed in their own case.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Twilight:
I'm just pointing out that for a segment of the population the phrase may be having the opposite effect of what was originally intended and that may have to do with other conversations that are currently going on around us.
Yes. I agree that different people can interpret the same words very differently. And that context plays an important part in people's interpretations. And that the same words can be spoken very differently. Communication is complex, and easily breaks down, because we are all so different. And yet we all still attempt to communicate, and take the risk of being misunderstood, in the hopes of being understood. I like to think it's worth it - that despite some people disliking certain phrases, the phrases are still having a positive impact and making a positive change, albeit slow, in society's attitudes. I know there have been campaigns and slogans I've hated, and thought totally futile and ineffective, but then I've heard other people say the campaigns really changed their attitude and challenged their prejudices.
Posted by RuthW (# 13) on
:
quote:
Originally posted by Fineline:
I would question whether that was intended though - the message of disability activists tends to be that it's not a dreadful thing to have a disability. You adapt, you become organised at working round it. You want respect, to be treated like an equal - not pity. A lot of disability activists talk about the idea that society is what disables people - that people's attitudes disable people more than their disability does. So if people are horrified at the idea of becoming disabled, this is not surely not what most disabled activists want - it increases the 'them and us' divide.
...
Perhaps if people are reading the mention of the possibility of anyone becoming disabled as a terrible threat, this says more about their attitude than about the people saying it.
Oh, please. From what I see of disability, it's not exactly a walk in the park, so yeah, I'm not too excited about the possibility of becoming disabled. And don't give me the crap about how having a disability is all about learning to adapt and work around it, and that it only sucks because society makes it suck. My dad's life with Parkinson's is one loss after another. He has adapted again and again, and he's unbelievably stubborn about not giving things up until it's dangerous for him not to, but his life just keeps getting smaller and smaller. He gets depressed, he worries about being a burden on my mother, he feels like his life is losing its value, and he has early signs of dementia. Money certainly helps, and I'm glad that he's generally in the company of people who don't need to have their attitude toward him challenged or adjusted, but still -- it sucks, and he thinks it's dreadful.
I have thought a fair amount about what disability might mean for me, as it happens, and not in an entirely idle "what if I get hit by a truck?" kind of way. My father was diagnosed with early-onset Parkinson's, as was his mother, and early-onset Parkinson's is thought to have a strong genetic component. I've reached 50 without symptoms, and I'm pretty fucking happy about it because, yeah, some of the things my father goes through are dreadful. There's a whole thread in Hell on how much cancer sucks -- go over there are tell those folks that disabling disease is not really that dreadful.
Posted by Porridge (# 15405) on
:
I'm afraid I'm like a lot of pragmatically callous people, in rarely giving a thought to a dozen or a hundred or a million different issues until somehow, there it is in my face.
I first heard the TAB phrase only after beginning to work with people who have disabilities; perhaps that's why I react to it differently than others.
I entered this field by accident -- I was job-hunting in an entirely different line of work and answered an ad that I didn't fully understand but which sounded interesting -- and have remained within the field for lo these many years, though I've held three different jobs at three different agencies within it.
Frankly, this whole "desire to help others" motivation being discussed upthread seems, well, thin to me in speculating about what we should or shouldn't say. do and how to revent such deaths. Frankly, I think most of us have all we can handle managing our lives and/or families and/or jobs, etc.
Sure, we'll send a check (if we can afford it) to support some cause -- helping the victims of natural disasters or terrorist attacks. Some of us will even put our boots on the ground and fill sandbags or man a coffee earn or sift debris.
Our expectation, though, is that that first check puts "paid" to our obligation. Our motives often are to help put things back the way they were, or re-establish what we regard as "normal." And then, for many of us, we're done.
No such goal seems immediately obvious with this population. They can't return to a normal they've never known. We don't much feel like we're helping when what we're really doing is maintaining a status which is generally pretty slow.
Most of the time, the best we can hope for are small, cumulative changes devoid of much drama, and there are few cute covergirl images.
Would better, or at least different, PR help?
Posted by Fineline (# 12143) on
:
quote:
Originally posted by RuthW:
Oh, please. From what I see of disability, it's not exactly a walk in the park, so yeah, I'm not too excited about the possibility of becoming disabled. And don't give me the crap about how having a disability is all about learning to adapt and work around it, and that it only sucks because society makes it suck.
I didn't say it only sucks because society makes it suck. I said that a common view among disability activists (and which I have personally found to be the case) is the society disables people more than their disability does. Of course disabilities can suck - but the thing is, if you have a disability, particularly if you've had it all your life, you're not thinking about your disability all day long. You are also getting on with life. Of course you learn to adapt and work around it - you have to. Obviously each person's disability is different, but practically everyone I know with a disability, no matter how much it sucks, is adapting and working around it, and really doesn't see it as the most dreadful thing in the world. Of course if a person acquires a disability later in life, rather than being born with it, there will be a period of grieving - that is natural. But I don't know anyone with a disability who would welcome people thinking it must be the worst thing in the world to be them.
The truth is, we all have shit in our lives, whether we have a disability or not. Having a disability doesn't automatically make your life shitter than everyone who doesn't have a disability. For myself, having Aspergers is difficult, but it's all I know, so it's not something I'm thinking about all day long. From what I learn about people who are not on the autism spectrum, they process a lot of things automatically that I have to process with my intellect - which must be very easy and convenient for them. I get exhausted a lot. I get a lot of sensory overload which can be very uncomfortable. But I'm actually quite happy being me. If I got the opportunity to swap with being you, for instance, I wouldn't want to.
Posted by la vie en rouge (# 10688) on
:
With respect (in Hell! Who knew? ) I think Aspergers is a bit different to certain physical disabilities. Because having Aspergers is a part of person's personality, I've heard a lot of Aspies say they wouldn't want to be without it because they wouldn't be themselves any more. That I can understand.
OTOH I think plenty of people with physical disabilities would happily do without them if they had a choice. My boyfriend, for example, has a severe visual impairment. He works around it, has a productive life doing a job he loves (schoolteacher), and one of the things I most admire about him is his ability to go through large amounts of very sucky medical treatment without getting bitter and twisted (he's currently recovering from having a detached retina, and you don't even want to know how much that hurts). His whole life is not defined by being disabled. However, if tomorrow he was offered the possibility of being able to see, I'm fairly sure he wouldn't hesitate for a second to say goodbye to the disability.
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]
[ 21. June 2013, 09:18: Message edited by: la vie en rouge ]
Posted by Moo (# 107) on
:
quote:
Originally posted by la vie en rouge:
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]
I knew a woman who had been profoundly deaf from birth. She was in her twenties when I met her. She said that she wished she hadn't been born deaf, but if she suddenly became able to hear, the noise might drive her crazy.
Moo
Posted by Sine Nomine (# 66) on
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I have heard it suggested that the beggars healed by Jesus might have been pissed when they had to find a new line of work.
Posted by Fineline (# 12143) on
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quote:
Originally posted by la vie en rouge:
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]
I think you misunderstood my post if you thought I was suggesting that. I'm not sure what I said to make you think that - but apologies for the miscommunication. Of course, lots of people with disabilities would prefer not to have their disability. It would be stupid to suggest otherwise. And yes, Aspergers is different, but there still are plenty of elements of my Aspergers that I'd change if I had the choice. I don't like the disabling fatigue I get (it's so frustrating to have to spend lots of time in bed doing nothing, when I have so much I'd like to do). I also don't like the sensory overload - it gets very overwhelming, uncomfortable and often painful, and stops me being able to function sometimes. And the fact I don't recognise faces - that is very embarrassing. And there are other elements I don't like - too many to list here. I'd change those if I could - if there was an imaginary magic spell that could fix them. But there isn't, so it's not something I spend time thinking about.
What I was saying was that if I were given the choice, I wouldn't change with RuthW. I wouldn't be her instead of myself. I wouldn't be anyone instead of myself. Because no one's life is a bed of roses. Everyone has shit in their lives, as I said. RuthW might not have Aspergers or a disability, but she will have other unpleasant things in her life, I'm sure. And I don't want to give up my shit and take someone else's shit. Better the devil you know and all that. I'm sure most people have things in their life that they would like to change. Not just people with disabilities. Having a disability isn't the worst thing ever that can happen to someone.
To say that people with disabilities don't normally want to be seen as terribly unfortunate and pitied, as if their fate was the worst fate ever, is not the same as saying they wouldn't change things if they could. But I think it's important to point out that lots of people without disabilities would also change things in their lives too.
Actually, if I had a choice of one thing to change in my life, the unpleasant aspects of Aspergers would not be the thing I would change. I'd get my eyesight fixed - even though my eyesight is not a disability, as it is corrected with glasses. I would get it fixed so I could read without glasses. I love reading, and I find it far more comfortable to read without glasses, but I've become so short sighted that the only way I can read without glasses is to put the book up to my nose to read, which is not comfortable either. I imagine that I'm not the only person with a disability, who, if asked which one element of their life they'd want changed, would select something other than the disability.
Posted by Fineline (# 12143) on
:
quote:
Originally posted by Moo:
]I knew a woman who had been profoundly deaf from birth. She was in her twenties when I met her. She said that she wished she hadn't been born deaf, but if she suddenly became able to hear, the noise might drive her crazy.
Moo
Generally, people in Deaf communities don't see being deaf as a disability - because in their communities, everyone is deaf, so they communicate by sign language, and have their own Deaf culture. Being deaf is only a disability in a predominantly hearing community. Same principle applies to a lot of disabilities. If no one had legs, then not having legs wouldn't be a disability - society would be totally adapted around it, and people would function just fine.
Lots of Aspies say they don't see Aspergers as a disability, and if there was a pill to get rid of their Aspergers they wouldn't take it - although I do find when I say 'Well, I'd keep the good parts, but I'd be quite happy to take a pill to get rid of sensory overload', I haven't yet come across any Aspie who hasn't conceded that they'd take such a pill too!
Posted by Doublethink (# 1984) on
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quote:
Originally posted by Moo:
quote:
Originally posted by la vie en rouge:
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]
I knew a woman who had been profoundly deaf from birth. She was in her twenties when I met her. She said that she wished she hadn't been born deaf, but if she suddenly became able to hear, the noise might drive her crazy.
Moo
There is clinical evidence that is you suddenly reacquire a sense (or acquire it for the first time) it can be quite traumatic if it is not managed properly. Depends how long you have been without - the brain has to readapt.
Posted by Doublethink (# 1984) on
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quote:
Originally posted by Fineline:
Being deaf is only a disability in a predominantly hearing community. Same principle applies to a lot of disabilities. If no one had legs, then not having legs wouldn't be a disability - society would be totally adapted around it, and people would function just fine.
I disagree with this. A social model of disability is important but it is not the whole story. I have seen model that describes disability in three parts. - There is a core difference / impairment - perhaps damage to the auditory nerves due interruption of oxygen supply during birth. In other words there is an objective difference in one's physical self
- There is disability - the way that difference manifests in the world, e.g. can not hear. Which is a problem not just because of society, but also because you can't hear a stampede or a fire or because most people are not deaf and your communication and socialisation with people is impaired
- Then there is handicap - which is what society does to you, when it does not adjust. E.g. When deaf children were not permitted to sign, or if people assume because you have a physical disability you are worthless and should be put out of sight and out of mind in an abusive institution. Or less dramatically, but more pervasively, a built environment that assumes you can easily walk.
You can adapt to having no legs, and society can adapt itself around you - but it is inherently more difficult to be a human being with no legs because we haven't evolved the adaptations to go with that.
I think one of our biggest problems though, is that we don't trumpet the contributions made to society by ordinary people with disabilities. I don't mean paralympians and Stephen Hawking, but - for example - the lady with an intellectual disability who worked the till in one of our local Oxfam shops, five days a week, for years.
Some active retired person without a disability who did that would be celebrated for their philanthropy.
[ 22. June 2013, 07:59: Message edited by: Doublethink ]
Posted by mousethief (# 953) on
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quote:
Originally posted by Sine Nomine:
I have heard it suggested that the beggars healed by Jesus might have been pissed when they had to find a new line of work.
Probably from Monty Python's "Life of Brian."
Posted by Golden Key (# 1468) on
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quote:
Originally posted by Doublethink:
[There is clinical evidence that is you suddenly reacquire a sense (or acquire it for the first time) it can be quite traumatic if it is not managed properly. Depends how long you have been without - the brain has to readapt.
I've read of people who've always been blind and are given sight. Sometimes, it's too much, and they revert to closing their eyes.
Posted by Sioni Sais (# 5713) on
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quote:
Originally posted by mousethief:
quote:
Originally posted by Sine Nomine:
I have heard it suggested that the beggars healed by Jesus might have been pissed when they had to find a new line of work.
Probably from Monty Python's "Life of Brian."
Thinks: ex-beggars sat around arguing "What did Jesus ever do for us?
Posted by mousethief (# 953) on
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quote:
Originally posted by Sioni Sais:
Thinks: ex-beggars sat around arguing "What did Jesus ever do for us?
No, but that would be good! Here, try this.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Doublethink:
quote:
Originally posted by Fineline:
Being deaf is only a disability in a predominantly hearing community. Same principle applies to a lot of disabilities. If no one had legs, then not having legs wouldn't be a disability - society would be totally adapted around it, and people would function just fine.
I disagree with this. A social model of disability is important but it is not the whole story.
I agree the social model is not the whole story. And that is why I said it applies to a lot of disabilities, not all of them. It doesn't account for pain, for instance - people in pain will be in pain regardless of society. And I am aware of the 'impairment, disability, handicap' model. It is a good model, but I'm not quite sure how it contradicts what I have said.
Of course, we have legs and hearing because they are useful. But if no one in society had them, then while we would be missing something potentially useful, we would adapt so that it wouldn't actually be a disability. If we couldn't hear, our other senses would be heightened and we'd detect danger in other ways.
You say that deafness 'is a problem not just because of society, but also because you can't hear a stampede or a fire or because most people are not deaf and your communication and socialisation with people is impaired'. Those last reasons are precisely because of society. If most people are not deaf, of course deafness is a disability. That is what I said: 'Being deaf is only a disability in a predominantly hearing community.' As for hearing a stampede or a fire - if everyone in society was deaf, I am very sure that the other senses would detect a stampede or fire.
Regardless of which model you are using, disability (and impairment and handicap) are defined by comparison. If everyone has the same thing, then these words become useless to describe it. And realistically, there are all kinds of 'normal' difficulties that all humans face, in body and mind, that would potentially be seen as disabilities if the majority of people didn't have them.
Posted by Sine Nomine (# 66) on
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The Mormons are right. Everyone should have their own planet.
Posted by comet (# 10353) on
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and yet, so many billions of bastards who refuse to vacate mine.
Posted by Moo (# 107) on
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Helen Keller was once asked which she thought was worse, blindness or deafness.
She said that blindness cut you off from things, and deafness cut you off from people She thought deafness was worse.
Moo
Posted by PeteC (# 10422) on
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Miss Keller was a very astute woman.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Moo:
Helen Keller was once asked which she thought was worse, blindness or deafness.
She said that blindness cut you off from things, and deafness cut you off from people She thought deafness was worse.
Moo
That is interesting. I've not heard that before. I wonder if she would have said the same if she'd had the experience of being deaf while being able to see, and also the experience of being blind while able to hear. It must be hard to judge if you've never had either - you don't experience how the two are interlinked. I'm just thinking about how several of the children I work with don't talk, and so much of our communication is visual. I think maybe I would feel more cut off from people if I couldn't see - although of course it's impossible to speculate accurately while being able to see and hear.
Posted by Porridge (# 15405) on
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quote:
Originally posted by Fineline:
quote:
Originally posted by Moo:
Helen Keller was once asked which she thought was worse, blindness or deafness.
She said that blindness cut you off from things, and deafness cut you off from people She thought deafness was worse.
Moo
That is interesting. I've not heard that before. I wonder if she would have said the same if she'd had the experience of being deaf while being able to see, and also the experience of being blind while able to hear. It must be hard to judge if you've never had either - you don't experience how the two are interlinked. I'm just thinking about how several of the children I work with don't talk, and so much of our communication is visual. I think maybe I would feel more cut off from people if I couldn't see - although of course it's impossible to speculate accurately while being able to see and hear.
Helen Keller was born with both sight and hearing. She lost them during illness in her early childhood. Granted she did then have both, rather than experiencing these one at a time, and I don't know what, if any, memories she retained of these experiences. But that initial experience may have been important in her later insight.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Porridge:
Helen Keller was born with both sight and hearing. She lost them during illness in her early childhood. Granted she did then have both, rather than experiencing these one at a time, and I don't know what, if any, memories she retained of these experiences. But that initial experience may have been important in her later insight.
Ah, okay - 19 months old, according to Wikipedia. I heard her story a long time ago, and must have remembered it wrong. But that makes more sense, actually, in terms of her ability to develop communication skills. She would have developed a lot of language already, while her mind was in its formative stage. That must have made it easier for her to learn to communicate and use language later on. I'm still not convinced that we use sight for things and hearing for people - it doesn't seem like such a binary to me - but I may be wrong, and I guess to some extent it differs from person to person. But it seems to me that both deafness and blindness would cut you off from people in different ways, because you can neither hear them nor see their lip movements/signs/gestures/facial expressions/eye contact, etc.
I have a deaf friend who isn't cut off from people at all - she has lots of friends and is far more sociable than I am. Like Helen Keller, she wasn't deaf from birth though - I think she became deaf around the same age as Helen Keller did - so she would have already developed language (as in the English language) which makes a big difference in terms of communicating with the non-deaf world, and also in terms of being able to later learn sign language.
Posted by QLib (# 43) on
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I think, to be fair to Helen Keller, she was obviously summarising for the sake of simplicity. Both blindness and deafness create some barriers to communication but - here's where we get to the social model - those barriers are not just about the impairment; what's on the other side also matters. As far as I can judge from the life stories I've heard, one of the commonest side effects of sudden sight loss in your teens is the loss of all your friends. You may make new friends later but, in the meantime, you may have learnt things about human nature that you'd rather not have known.
Posted by Fineline (# 12143) on
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I think (trying to imagine myself in the different situations - and there's probably lots of aspects I haven't thought of) that if I went blind, I would be a lot more nervous about going out than if I went deaf. I can imagine I'd want to stay at home, and I'd probably isolate myself in doing so. I would feel more dependent on others. Even when my glasses broke at work, and I had to go to find someone on the management team to tell them I needed to go to get them fixed, I had to ask a colleague to come with me, because I wouldn't be able to see the way or recognise the people I had to talk to.
Posted by QLib (# 43) on
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quote:
Originally posted by Fineline:
I think ... that if I went blind, I can imagine I'd want to stay at home, and I'd probably isolate myself in doing so. I would feel more dependent on others.
Temporarily, perhaps, (not sure about "want") but there are ways round that. It gets tricky once you get past retirement age as the government no longer gives a fuck whether you are functional or not - though local blind associations may still help. However, if you go blind before retirement age you can get training to help you live independently.
Posted by Twilight (# 2832) on
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Ray Charles (blind) left a huge amount of money to the deaf. He said he thought it would be far worse because they wouldn't have music. I know I would rather see. Reading comes far before music in my life.
I guess a lot of it is what means the most to you. I remember hearing a young woman who couldn't walk, speaking before congress at a "right to die" hearing. She wanted to die because she could no longer ski. I was amazed.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Twilight:
Reading comes far before music in my life.
I am the same - that is why I was thinking it might depend on the person. I prefer silence to music. I prefer communicating with people in writing rather than speaking. I easily get overwhelmed with sounds, but I love to read, and I love art, and drawing what I see. Although it's impossible to tell unless one is in the situation, and of course being deaf would be hard in many ways, I think being deaf would be easier for me than being blind.
And QLib, yes, of course there would be ways of finding strategies to find one's way around if one went blind. I was just imagining what my immediate reaction would be. My gran went blind in her seventies, and she continued to get around and see her friends, and was as social as ever - but she was a very social person in general. And she got support from the RNIB. My grandad, whose sight and hearing were both fine, was a lot more isolated, because he wasn't a social person, and like me, he easily got overwhelmed by noise and people.
Posted by Porridge (# 15405) on
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quote:
Originally posted by Twilight:
Ray Charles (blind) left a huge amount of money to the deaf. He said he thought it would be far worse because they wouldn't have music. I know I would rather see. Reading comes far before music in my life.
Good thing this is posted in Hell.
As one who is not deaf, but experiences significant hearing loss, I find Charles's statement infuriating and brutally insensitive. Yes, music is wonderful (when you can hear it). That is not the barrier, however, which the Deaf (and merely hard-of-hearing, like me) must contend with.
It's perfectly possible to live life without music. Living it without adequate or full communication with other human beings renders life an incredibly frustrating struggle.
Hearing people have NO IDEA how much general information we pick up about the world through simple, ordinary conversation.
Examples:
The deaf client whose doctor instructed her via TTY to take two aspirin and call next day and disconnected. A remarkably healthy young woman, the client did not know what aspirins were and had no idea how or where to obtain them. She grew up in a hearing family and never "picked up" this info, usually conveyed accidently as side-info to a larger conversation.
I am constantly encountering people who know me, but I have no idea what their names are. They've been mentioned to me, no doubt, but I must work so hard to "get" the info I need at any given moment, I must focus only on what's immediately relevant and let the rest go. Even with this, I am exhausted at the end of the day.
Having a lover or other intimate whisper sweet nothings in one's ear, and being forced to respond with, "What was that?"
Intimacy is a challenge when it must be carried out at a bellow.
And as to reading, there is Braille.
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.
In which case, the rest of us might be better off if she were.
Posted by PeteC (# 10422) on
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Amen Porridge! It is the one part of my disability that irritates me beyond belief. And it irritates other people equally strongly.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Porridge:
Hearing people have NO IDEA how much general information we pick up about the world through simple, ordinary conversation.
Examples:
The deaf client whose doctor instructed her via TTY to take two aspirin and call next day and disconnected. A remarkably healthy young woman, the client did not know what aspirins were and had no idea how or where to obtain them. She grew up in a hearing family and never "picked up" this info, usually conveyed accidently as side-info to a larger conversation.
When I was training to work with children with hearing impairment, we learnt about this sort of thing - apparently children with hearing impairment can be mistaken for being on the autism spectrum if the hearing impairment isn't detected, because of the fact they don't pick up on the banter between other children in the classroom. The banter and jokes that are whispered during class while the teacher is talking are part of social development and knowing what's going on socially one's peers. Children with hearing impairment are excluded from all this because they just don't hear it. Autistic children don't pick up on it - because of difficulty multitasking and difficulty picking things up indirectly. Of course, this also applies to adults as well as children. So although autism and hearing impairment are very different in many ways, I can relate to this element of hearing impairment, because of being on the autism spectrum - there is so much information that I just miss, and people think I'm stupid for not knowing it.
Posted by Doublethink (# 1984) on
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Trying to work out what disability is 'worst' is probably futile - I only raised the issue re deafness because I wanted to challenge the idea of it as a difference solely.
We can not live the lives we have not had, self-identity is so important that I imagine if you have lived with some condition for a long time it will be difficult to see how you would be you without it. Likewise, if the acquisition of a disability fundamentally disrupts your sense of yourself you may wish to die. Also, the stigma that goes with the label of disability may make it important to some people to assert they do not have a disability - but I think that is at least partly because the label of disability is heard as an assertion of lack of worth. The problem with changing the language every ten years, is that whilst negative attitudes persist it will always acquire negative connotations.
There was a young British rugby player (in his twenties I think) who with the support of his parents went to the Dignitas clinic and ended his life. He had broken his neck playing the game and couldn't bear the idea of his future. Christopher Reeve handled things differently.
Posted by Doublethink (# 1984) on
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quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.
In which case, the rest of us might be better off if she were.
Failed to quote this in my last post - I see this woman as being like the young rugby player I referred to.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Porridge:
They've been mentioned to me, no doubt, but I must work so hard to "get" the info I need at any given moment, I must focus only on what's immediately relevant and let the rest go. Even with this, I am exhausted at the end of the day.
And this too is how it is for me. That this is also an element of deafness didn't occur to me, although now you say it, it is obvious.
Posted by Fineline (# 12143) on
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quote:
Originally posted by Doublethink:
Also, the stigma that goes with the label of disability may make it important to some people to assert they do not have a disability - but I think that is at least partly because the label of disability is heard as an assertion of lack of worth.
I find it very weird to have a label of disability, since I have always had Aspergers, but was only diagnosed as an adult, so suddenly as an adult I become 'disabled', when in fact I'm just the way I always was. My dad insists that I don't have a disability, because his understanding of the word 'disabled' is someone in a wheelchair.
I think it's also weird for people who grew up being told they were 'handicapped', so that is part of their self-understanding, and then later in life they get told that 'handicapped' is an offensive word and they are 'disabled' instead. That can be quite difficult for people.
Labels have their uses, but also can be unhelpful in many ways.
Posted by luvanddaisies (# 5761) on
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That seems to be something a lot of people with massively varying disabilities and conditions seem to say - the tiring-ness of extra effort to get through the day, that they might not have to expend if their body/mind worked typically (not even going to try to define what 'typically' means).
(x-posted with Fineline - was replying to Fineline's post above the last one)
[ 23. June 2013, 20:05: Message edited by: luvanddaisies ]
Posted by Porridge (# 15405) on
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quote:
Originally posted by Doublethink:
quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.
In which case, the rest of us might be better off if she were.
Failed to quote this in my last post - I see this woman as being like the young rugby player I referred to.
Yes, exactly. People with disabilities must learn, above all else, that they are not defined by their disabilities. It might be a good idea for people with particular gifts to learn that they are not defined by those gifts.
People willing to die because they can no longer ski or play rugby have placed far too many eggs in a single, fragile basket.
Posted by Golden Key (# 1468) on
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quote:
Originally posted by Doublethink:
There was a young British rugby player (in his twenties I think) who with the support of his parents went to the Dignitas clinic and ended his life. He had broken his neck playing the game and couldn't bear the idea of his future. Christopher Reeve handled things differently.
But CR had financial and other resources that most people don't have. Dana, his wife, acknowledged that they were very lucky in that respect, and that she didn't know how other people made it through.
IIRC, it took several helpers to get him through the day. Dana devoted herself full time for the first year. Then she went back to her career, to keep some balance. (Wise, IMHO.)
NOT saying that anyone should (or shouldn't) kill themselves in such a situation. Just that resources make a difference.
Posted by QLib (# 43) on
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quote:
Originally posted by Porridge:
quote:
Originally posted by Doublethink:
quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.
In which case, the rest of us might be better off if she were.
Failed to quote this in my last post - I see this woman as being like the young rugby player I referred to.
Yes, exactly. People with disabilities must learn, above all else, that they are not defined by their disabilities. ...
People willing to die because they can no longer ski or play rugby have placed far too many eggs in a single, fragile basket.
Don't be a twat, Porridge - being deaf doesn't give you the right to pontificate about what people with other disabilities 'must learn'. Perhaps you'd like to walk a mile in the rugby player's shoes before making that judgement. Except that you wouldn't actually be able to walk, of course.
I don't suppose that, in either case, it was just about skiing or just about rugby. In fact Doublethink said he couldn't face his future, not that he couldn't face playing rugby again.
Posted by Porridge (# 15405) on
:
quote:
Originally posted by QLib:
Don't be a twat, Porridge - being deaf doesn't give you the right to pontificate about what people with other disabilities 'must learn'.
First, there's an enormous difference between being deaf (I'm not) and being hard-of-hearing (I am).
Second, in the field of acquired disabilities, it's pretty standard practice to help the newly-disabled not only adjust to the acquired disability, but to include in that process a constant focus on what the person can still do, as opposed to what the person can no longer do. "Don't define yourself by your disability" is a standard mantra in this field, not merely my "pontification." Surely the reasons for this focus are obvious: while it's important and necessary to mourn the losses of limbs, senses, functions, and abilities, identifying solely with those losses while ignoring or refusing remaining possibilities is a form of pathology. It can prevent recovery.
Third, as reported on this thread, the skier specifically claimed she wished to die because she could no longer ski. If she mentioned other factors, it went unreported, at least on this thread.
Either rehab staff dropped the ball with her, or she had only partially recovered, or she had focused so intensively on skiing, to the exclusion of other important life issues, that she lost the plot. Were there friends and family who loved her? If so, she seems to have counted her skiing of more value than their potential loss and grief. Were there other skills and talents which she could develop and use to help herself and/or others in her situation? If so, she seems to have counted her skiing of more value than all her other potential.
I can certainly understand and respect the wish to die for individuals enduring, with no hope of relief or recovery, constant pain. I can certainly understand that dealing with a sudden and catastrophic loss of function like Reeve's is overwhelming, especially in situations where there's far less help available than he had. I can certainly understand that feeling one is a crushing burden to loved ones will induce enormous guilt and depression.
If someone says, "Look, not only have I lost many of my functional abilities, but also I've been abandoned by my nearest and dearest because my care is too much for them, and there's no prospect, even experimentally, of advances which might improve my situation" -- then I can certainly understand and respect that person's wish to die.
But are we really prepared to entertain requests for termination on the basis of skiing versus not skiing? Because . . .
quote:
Originally posted by QLib:
I don't suppose that, in either case, it was just about skiing
. . . that was that particular individual's claim. You may be right (I fervently hope you are) that there were additional issues, but that's an assumption. Skiing was the reason given in the individual's statement according to Twilight.
quote:
Originally posted by QLib:
. . . or just about rugby. In fact Doublethink said he couldn't face his future, not that he couldn't face playing rugby again.
Here we're dealing with the kind of prediction many people make when depressed. Depression (and mournful predictions about all the things we'll *never* do again or the current status quo which will *always* obtain) is common in acquired disability; so is depression, which itself is often disabling (and I'm painfully familiar with that phenomenon). Would you seriously entertain requests for death from someone who is overwhelmed, depressed, and making predictions -- sometimes inaccurate -- that include words like "never' and "always?"
Posted by QLib (# 43) on
:
Well, it's all about tone, isn't it? I don't have an argument with your position as explained above. It was really this that got me riled:
quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.
In which case, the rest of us might be better off if she were.
Resisting the 'disability as tragedy' model is one thing (and entirely laudable); suggesting that the world might be better off without a disabled person who loved skiing too much is something else - and not in a good way.
Posted by Porridge (# 15405) on
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Well, this is Hell, and that was a Hellish comment -- perhaps more hellish than sincerely meant. In light of the daily suffering some of my clients endure, the skiing remark angered me.
Most of my clients struggle with profound isolation, loneliness, depression, discrimination, physical intimidation from others, fear, extreme poverty, and deep alienation. Even for those with the physical capacity to manage it, getting on a pair of skis and zooming down a mountain for fun would be sheer out-of-reach fantasy. They can't afford to rent equipment or purchase appropriate clothing; they have no way to get to a ski resort; if they got there, they might well be refused service or access (however illegally); and you can be sure that if it happened at all (probably over the objections of family and/or guardians and/or those supervising me on that basis of liability for their safety), it would happen only once, because it would exhaust their will and systemic resources.
Yet they do not give up on life; they savor miniscule pleasures and celebrate tiny victories; and they keep on keeping on in hopes of small improving tweaks to their situations.
I do think that the statement as reported (and I recognize that it may have been reported incompletely or inaccurately) indicates a shockingly skewed set of priorities.
Posted by Erroneous Monk (# 10858) on
:
quote:
Originally posted by Doublethink:
We can not live the lives we have not had, self-identity is so important that I imagine if you have lived with some condition for a long time it will be difficult to see how you would be you without it. Likewise, if the acquisition of a disability fundamentally disrupts your sense of yourself you may wish to die.
This thought about sense of self seems wise to me. When I look back to the time before I developed a chronic neurological condition and lost so much eyesight that my driving licence was withdrawn, I don't think it would have been helpful to me to have thought of myself as "temporarily-able bodied" but it is only in retrospect, that I realised that I was only temporarily *that person*. I didn't appreciatd that at the time and if I could go back and give my younger self that understanding I would.
That said, telling people that they will not always be the person they think they are won't necessarily make them believe it, or understand it. I mean, I knew that becoming a mother would change me, but that didn't prepare me for the big change in sense of self that came with pregnancy, birth and mothering.
It can be very hard to accept that to live is to change, and to be perfect is to have changed often.
© Ship of Fools 2016
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