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jk1
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17 Aug 2014, 4:32 am

r2d2 wrote:
I think there are many people here who if they could take a pill and have no Asperger's anymore, they would refuse the pill. I think there are very few people who have lost the use of their legs and are dependent on a wheel chair that would refuse a treatment that would completely cure them.

I would say that one unique problem with a neurological condition like Asperger's is that many people will not see any visible disability and will judge any issues as matters of personal weakness or even lack of character. That would not be the case with someone with an obvious visible physical disability such as being in a wheel chair.


I agree with both paragraphs.



Bun
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17 Aug 2014, 7:21 am

Then you should read the perspective of someone with a visible disability, which I've posted earlier.


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Callista
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17 Aug 2014, 10:59 am

r2d2 wrote:
I think there are many people here who if they could take a pill and have no Asperger's anymore, they would refuse the pill. I think there are very few people who have lost the use of their legs and are dependent on a wheel chair that would refuse a treatment that would completely cure them.
Why do you assume that?

I have friends who use wheelchairs. Many of them would also refuse "the pill". We've talked about it. Among the more severe is a girl who has spastic quadriplegia, who uses a communication device to talk.... another is a guy with muscular dystrophy (a disease which shortens the lifespan)... They both consider their disabilities to be part of who they are, and would not choose to get rid of them. The severity of the impairment doesn't seem to have a bearing on it, same as with autistics.

This isn't universal, no more than it is among autistics, but the opinion of whether or not they would "take the pill" probably has about the same spread for physical disabilities, especially those active in disability rights. Some would, some wouldn't; for many, disability is an identity as well as a description of their physical or mental conditions. Their lives are different because they have a disability; they are who they are because they have that condition, and they wouldn't change it. They don't refuse medical treatment, but they also don't sit around feeling sorry for themselves because there's no cure. They pursue their goals and get on with their lives, much like we do.


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17 Aug 2014, 11:20 am

Callista wrote:
r2d2 wrote:
I think there are many people here who if they could take a pill and have no Asperger's anymore, they would refuse the pill. I think there are very few people who have lost the use of their legs and are dependent on a wheel chair that would refuse a treatment that would completely cure them.
Why do you assume that?

I have friends who use wheelchairs. Many of them would also refuse "the pill". We've talked about it. Among the more severe is a girl who has spastic quadriplegia, who uses a communication device to talk.... another is a guy with muscular dystrophy (a disease which shortens the lifespan)... They both consider their disabilities to be part of who they are, and would not choose to get rid of them. The severity of the impairment doesn't seem to have a bearing on it, same as with autistics.

This isn't universal, no more than it is among autistics, but the opinion of whether or not they would "take the pill" probably has about the same spread for physical disabilities, especially those active in disability rights. Some would, some wouldn't; for many, disability is an identity as well as a description of their physical or mental conditions. Their lives are different because they have a disability; they are who they are because they have that condition, and they wouldn't change it. They don't refuse medical treatment, but they also don't sit around feeling sorry for themselves because there's no cure. They pursue their goals and get on with their lives, much like we do.


When I was a kid I got a bunch of blood tests cause they thought I might have had a form of MD, kinda freaked me out since for a while I figured it was for sure going to be dead by the age of 20...turns out it's just an undefined muscle mutation sort of thing but not a known condition and as far as they can tell whatever it is doesn't really cause me significant physical problems. I wonder if I actually had ended up with that if I would have wanted a 'cure' if it was available or if I would have ended up feeling like its part of who I am. But I guess I'll never know.


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Callista
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17 Aug 2014, 12:57 pm

Sounds sensible. I don't think any of us really knows what we'd be like if our lives were different. That's why it's so presumptuous to assume that someone with one disability or another must have some particular opinion about it. Better to just ask them what their opinions actually are, right?

I'm reminded of another condition I have that most people would consider absolutely undesirable--I'm a child abuse survivor. And even that I wouldn't want to change, because I've learned so much from it; it's changed my perspective, helped me understand what it's like for people in positions where they're being abused by people in power. It was difficult and painful; I still have mild PTSD. But I wouldn't change it. So I think I understand how someone might consider even something so very negative to be part of who they are.


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17 Aug 2014, 11:46 pm

There are people who have next to no function of their limbs who prefer it that way, seriously? I think I can understand why though, maybe. I know many people who when they become permanently physically disabled become very depressed and self loath etc. Many people appear to go the opposite way though, becoming very much like Callista mentions. It appears to be coping mechanism to deal with an issue that has no option out, the same one used by many autistic people actually. I have to wonder if they were to be cured for say a week, would they actually want to go back? My opinion is I doubt it. I have a hard time thinking that someone would actually want their ability to walk taken away once they have become used to actually doing it, it can be quite handy.



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18 Aug 2014, 12:36 am

My wheelchair comes in pill form.

My anxiety was once so severe I couldn't leave the house, and I've had a fear of elevators ever since watching the Omen 2.

If I was actually in a wheelchair people might have offered me more assistance. But sometimes I feel like I can't get to places as though I'm physically disabled.


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18 Aug 2014, 1:20 am

rapidroy wrote:
There are people who have next to no function of their limbs who prefer it that way, seriously? I think I can understand why though, maybe. I know many people who when they become permanently physically disabled become very depressed and self loath etc. Many people appear to go the opposite way though, becoming very much like Callista mentions. It appears to be coping mechanism to deal with an issue that has no option out, the same one used by many autistic people actually. I have to wonder if they were to be cured for say a week, would they actually want to go back? My opinion is I doubt it. I have a hard time thinking that someone would actually want their ability to walk taken away once they have become used to actually doing it, it can be quite handy.
I don't think it's really a coping mechanism for most people. For some autistics, the coping mechanism similar to what you're talking about would be the idea that they are actually superior to neurotypicals--that autism makes them better. For people in wheelchairs, it's the "supercrip" thing, often the idea that "I'm so much better than you because I can do what I do from a wheelchair". People who honestly like their lives and enjoy them the way they are, are more content than anything else. They're like your average autistic who says, "Hey, my autism's part of me; I like me; I have better things to do than sit around and feel sorry for myself."

People are quite flexible, including when adjusting to a disability. People with disabilities, after an initial adjustment period if the disability was acquired, are not significantly different from typical people in terms of their self-reported quality of life. Even people with the most severe forms of disability, such as locked-in syndrome, report that their lives are worth living and enjoyable. Scarily, the doctors who treat disabled people have a completely different opinion, often judging their quality of life to be very poor, and even encouraging them not to seek life-saving treatment and "let nature take its course"--for example, not treating pneumonia in someone who could recover and live decades more, simply because they have quadriplegia.

Some disabled people do feel their lives are terrible. So do some non-disabled people. Even then, disabled people sometimes don't get treatment for depression because it is assumed to be completely expected that their disability would make them depressed, when in fact other people with very similar disabilities are quite happy.

This dichotomy, view of disability from the inside versus from the outside, needs to be repaired. We need to actually ask disabled people what their lives are like, instead of assuming we know just by looking at them and thinking about what their disability would be like for us.


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18 Aug 2014, 4:06 am

rapidroy wrote:
There are people who have next to no function of their limbs who prefer it that way, seriously? I think I can understand why though, maybe. I know many people who when they become permanently physically disabled become very depressed and self loath etc. Many people appear to go the opposite way though, becoming very much like Callista mentions. It appears to be coping mechanism to deal with an issue that has no option out, the same one used by many autistic people actually. I have to wonder if they were to be cured for say a week, would they actually want to go back? My opinion is I doubt it. I have a hard time thinking that someone would actually want their ability to walk taken away once they have become used to actually doing it, it can be quite handy.

Like I said, I'm used to it that way, I'm not going to want to carry myself around any other way. I'm against people who think I should be fixed like people here are again curebies.


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18 Aug 2014, 9:25 am

When you're in a wheelchair, people seem more tolerant for you. I remember some years ago when I was with a group of teenagers with disabilities, there was a 19-year-old boy in a wheelchair, who had lifelong mental retardation and needed 24-hour care, and all he could do was shout. He was really easily amused and would point and flap his hands and shout excitedly if something amused him. But nobody took much notice of his behaviour because he was in a wheelchair. The only time people looked was when they heard him shout (as he had a man's voice), but as soon as they saw that he was in a wheelchair, they accepted it and carried on.

But even if someone wasn't in a wheelchair but had severe mental retardation or Autism or some other condition that was noticeable in their actions, people would probably be more tolerant of that too because I've seen it for myself. But if you do something unusual that's only mild , you get interpreted as a ''weird nutter''. That's what happens to me anyway.


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18 Aug 2014, 5:13 pm

I know from experience, because someone very close to me has to deal with both autism spectrum disorder, and being in a wheelchair, due to a seizure disorder that has the side effect of extreme hypotonia. I would say, for him he doesn't mind, because of how apathetically indifferent he is.



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18 Aug 2014, 5:40 pm

In theory I'd rather have a physical disability than a mental one, because the physical one only limits your body, not your mind. But in reality I've never been in a wheelchair, and I don't know how isolating it would be compared to having an autism spectrum disorder. Some people with physical disabilities adapt in amazing ways: the existence of the paralympics is proof of that. On the other hand, I'm sure there are some people in wheelchairs feeling depressed, bitter, frustrated, etc.

In an ideal world, I'd be "normal". That is, no autism, depression or Crohn's. I probably should be better at accepting who I am, but I'm frustrated at how my life has turned out and so I'm not.



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18 Aug 2014, 10:54 pm

NiceCupOfTea wrote:
In theory I'd rather have a physical disability than a mental one, because the physical one only limits your body, not your mind. But in reality I've never been in a wheelchair, and I don't know how isolating it would be compared to having an autism spectrum disorder. Some people with physical disabilities adapt in amazing ways: the existence of the paralympics is proof of that. On the other hand, I'm sure there are some people in wheelchairs feeling depressed, bitter, frustrated, etc.

In an ideal world, I'd be "normal". That is, no autism, depression or Crohn's. I probably should be better at accepting who I am, but I'm frustrated at how my life has turned out and so I'm not.


I think that's valid. The majority of people in wheelchairs are NT. However I am also sure that they can be equally frustrated by prejudice, lack of opportunities and missing out on social life and outdoor activities.



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18 Aug 2014, 11:06 pm

r2d2 wrote:
I think there are many people here who if they could take a pill and have no Asperger's anymore, they would refuse the pill. I think there are very few people who have lost the use of their legs and are dependent on a wheel chair that would refuse a treatment that would completely cure them.

I would say that one unique problem with a neurological condition like Asperger's is that many people will not see any visible disability and will judge any issues as matters of personal weakness or even lack of character. That would not be the case with someone with an obvious visible physical disability such as being in a wheel chair.


I think you'd be surprised how many people would not choose to be cured of their physical disabilities. I've heard many people who have physical disabilities say that they wouldn't want to be cured because their disability made them who they are today. (I'm one of these people, BTW) It's also common in the Deaf community. To them, it's an identity..... They have their own culture.

I am a below knee amputee. Before my amputation, I used a wheelchair quite often. Even though it can be a pain, physically and financially, it's a part of who I am now and I wouldn't want to change it.

I also feel the same about my autism. If I had a way to be "cured" of my autism and become NT, I would NOT do it.


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18 Aug 2014, 11:33 pm

Bun wrote:
rapidroy wrote:
There are people who have next to no function of their limbs who prefer it that way, seriously? I think I can understand why though, maybe. I know many people who when they become permanently physically disabled become very depressed and self loath etc. Many people appear to go the opposite way though, becoming very much like Callista mentions. It appears to be coping mechanism to deal with an issue that has no option out, the same one used by many autistic people actually. I have to wonder if they were to be cured for say a week, would they actually want to go back? My opinion is I doubt it. I have a hard time thinking that someone would actually want their ability to walk taken away once they have become used to actually doing it, it can be quite handy.

Like I said, I'm used to it that way, I'm not going to want to carry myself around any other way. I'm against people who think I should be fixed like people here are again curebies.
Not sure if your referring to me or not, my statement regarding being cured was regarding physical disabilities not and ASD. My position regarding ASD and cures is its your choice what you choose to do with your body and I respect whatever choice you make. I am not a curebie however rereading what I wrote I can see where you could get the idea.



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24 Aug 2014, 9:51 am

I have both asperger syndrome and a severe seizure disorder with multiple seizure types. I know, that I am far safer in tbe wheelchair than, if I was just walking. I personally am apathetically indifferent to the world and the people around me. I don't care what others think, but it is really annoying being talked to like a child sometimes, as I am in my 20s.