cripman33
Junior Member
Posts: 91
Gender: Male
Dev Status: Disabled Male
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Post by cripman33 on Feb 20, 2020 17:14:28 GMT -5
Feeling compassion is something I cannot avoid, but it does not mean that I pity him or look down on him or respect him less in any way. But he is so sensitive about it. I think this is often a little bit tricky when dealing with PWD. I've found that many of us are taught to think like this. But instead of it resulting in people treating us like everyone else (which is obviously the goal) it's an over-correction. What ends up happening is that we eventually perceive any genuine emotional interactions as "pity" and either get angry, push that person away, or (if you're me) both. Isolation breeds isolation...
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Deleted
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Post by Deleted on Feb 20, 2020 21:04:57 GMT -5
If I were you, britishtetra , I think I couldn’t refrain from putting those thoughts exactly this way put there on Facebook. Ask them why they keep away. I am pretty sure most people simply don’t know how to behave. First of all they are terrified that something like this might happen to themselves. To look away is one way to deal with fear. But more than that, they are probably just insecure. And they don’t know what to do. Maybe they also feel that you have enough people around you. They simply cannot picture how your life really is and how you feel. You say you‘ve told them over the years that you are still the same. And it seems the most normal thing in the world if one only once tries to put themselves in your shoes. But still, I think sometimes people need a more direct approach in order to realize the obvious. What do you have to lose? I would give it a try and make a post on Facebook. I have one friend who is a para. He is allergic to people showing compassion. There are also some family related issues in his life which make me simply really feel so sorry for him. I can’t help it, when he tells me about it I cannot but say „I am so sorry“ from the bottom of my heart. But then he immediately replies „I don’t want you to feel sorry for me“. I find it difficult. I am not made from stone. Feeling compassion is something I cannot avoid, but it does not mean that I pity him or look down on him or respect him less in any way. But he is so sensitive about it. I think this is often a little bit tricky when dealing with PWD. I think sometimes it’s difficult for people to realise that when you say you’re sorry, it doesn’t have to mean that you’re sorry for them. It can be empathy with a situation or sorry that another person behaved in a certain way. Some people with disabilities make an immediate jump to thinking that saying sorry is pitying them. I guess maybe most people have such little understanding of disabilities or don’t get to meet disabled people that they get nervous and say the wrong things because they’re trying so hard to say the right things.
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Post by Hopper on Feb 21, 2020 14:06:11 GMT -5
I'll admit to being quick to judge others' intentions rather quickly in the past. I can understand how it can fustrate and even offend those who genuinly want to help. But there are so many that seem to want to help because they feel they have to that it sadly can become a default setting.
Sadly it's all too easy to be defensive sometimes.
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Post by Amee on Feb 21, 2020 16:30:16 GMT -5
I have one friend who is a para. He is allergic to people showing compassion. There are also some family related issues in his life which make me simply really feel so sorry for him. I can’t help it, when he tells me about it I cannot but say „I am so sorry“ from the bottom of my heart. But then he immediately replies „I don’t want you to feel sorry for me“. I find it difficult. I am not made from stone. Feeling compassion is something I cannot avoid, but it does not mean that I pity him or look down on him or respect him less in any way. But he is so sensitive about it. I think this is often a little bit tricky when dealing with PWD. That sounds really difficult linda. As someone, who tends to feel empathy and compassion very strongly, I can relate to that very well. I also agree it can be a bit of a tricky thing with PWD, because there's always this knowledge in the back of your head that many of them strongly dislike any kind of perceived "pity". For me personally, I think the determining factor is whether or not the person expresses pain or negative emotions to you. I completely understand that PWD reject pity that they receive simply because of the disability or because of "struggles" perceived by others as very difficult, which may be completely normal to them. When the "pity" (or compassion) is based simply and solely on the fact that a person is disabled or does things differently, then the pity is really based on the offensive assumption that because someone is disabled, they must be less happy than the average person. Because otherwise there's really no reason to feel sorry for someone simply because they have a disability. On the other hand, when someone (with or without a disability) tells you about a situation, an experience, a struggle or an aspect of their life that is or was painful for them - i.e. expresses pain - then unless you are a psychopath, you are going to feel some degree of empathy or compassion. I don't think it's wrong to feel that and hiding your compassion in order to not hurt someone's pride feels more patronizing to me than expressing it. Of course, I don't know what it's like to receive a lot of unwarranted and unwanted pity. I can really imagine how one can get overly sensitive to it that way. It probably takes an awful lot of emotional strength, patience and empathy with humanity to deal with all that graciously.
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Deleted
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Post by Deleted on Feb 21, 2020 17:30:17 GMT -5
I can understand both sides here. I'm not the kind of guy who wants a " pity bonus" because of his disability either. Usually I brood about everything bad in silence and hardly talk about it with anyone (except my already mentioned buddy, who is disabled himself.)
If I open up to someone else, it's not just anyone, but someone who I know is sincere in her/his regrets about the specific situation. In general, I notice this when I know this person a little better, which is normal for a confidential conversation.
Should I untypically open up to someone I do not know at all, I must at least try to differentiate between real and hypocritical compassion. Even if it' s of course much more difficult and certainly not always successful.
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Post by IcarusFellOnce on Feb 21, 2020 18:49:21 GMT -5
It's brought me closer to my true friends.. and brought me closer in some ways to my family... The play fighting really isn't there anymore with brothers and cousins.. ALTHOUGH with niece and nephews THEY LOVE when I wheelchair race around with them... or pretend we are flying in my chair or something. They also LOVE playing with the backup chair.
These injuries/disabilities can be isolating.. especially in a world that is NOT really made for you.... where you OFTEN have to adapt to it.. same goes with the people around you. Can be isolating.... but you can't let it be.
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Deleted
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Post by Deleted on Feb 21, 2020 19:53:14 GMT -5
It's brought me closer to my true friends.. and brought me closer in some ways to my family... The play fighting really isn't there anymore with brothers and cousins.. ALTHOUGH with niece and nephews THEY LOVE when I wheelchair race around with them... or pretend we are flying in my chair or something. They also LOVE playing with the backup chair. These injuries/disabilities can be isolating.. especially in a world that is NOT really made for you.... where you OFTEN have to adapt to it.. same goes with the people around you. Can be isolating.... but you can't let it be. You seem to still be very adventurous and active, the injury hasn’t held you back. Perhaps the isolation comes when we stay home, avoid contact or new situations and let our illness or disability become the main focus. Its tough though to force yourself out of the comfort zone.
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Post by IcarusFellOnce on Feb 22, 2020 2:39:26 GMT -5
ABSOLUTELY! Agree 100%. No one can FORCE you into or out of anything.. but hopefully by agreeing to be available to chat with... or interact with.. you can help people come out of a tough situation. That's what I seek to do.. what I live for.
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Post by zacc on Feb 22, 2020 12:59:37 GMT -5
As far as pity goes I totally understand that's impossible not to feel it for anyone that's in a tough situation. And I don't necessarily mind being pitied, having Duchenne sucks! But it bugs me when folks treat me weird because of pity. Like the other day I was leaving a physical therapy appointment and someone in the waiting room tried to give me a cup of water. I have no idea why other than for some weird pity reason. Or their's also a family friend who constantly asks me if I need help and that really bugs me, I mean yeah, I do need help but not constantly.
Anyway having DMD I'm fine with pity but I don't like when people make assumptions about my life as a disabled person. Like the idea that if you are severely disabled you have a low IQ, or that you are asexual.
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Post by Hopper on Feb 22, 2020 13:28:39 GMT -5
......the idea that if you are severely disabled you have a low IQ, or that you are asexual. Strongly agree with how fustrating these assumptions can be. Especially as some can come from a good place.
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cripman33
Junior Member
Posts: 91
Gender: Male
Dev Status: Disabled Male
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Post by cripman33 on Feb 22, 2020 13:32:30 GMT -5
......the idea that if you are severely disabled you have a low IQ, or that you are asexual. Strongly agree with how fustrating these assumptions can be. Especially as some can come from a good place. seconded
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Post by Hopper on Feb 22, 2020 18:34:01 GMT -5
Luckily, family and friends have embraced my disability fully over the years. Not always in a 'good' way as there is still a lot of well intentioned doubting from a few family members, but you can't change love can you?
And I can moan about them being condescending and what have you but even if that can be the case, they LOVE me all the same and that's the important thing.
Friends are easier in that there's no doubting and there never has been. I've been lucky to have friends like that. They are also very protective of me too, not overly so but in a way where I know they have my back if anyone poses a threat and I'd do the same for them.
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Deleted
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Post by Deleted on Feb 22, 2020 19:17:30 GMT -5
......the idea that if you are severely disabled you have a low IQ, or that you are asexual. Strongly agree with how fustrating these assumptions can be. Especially as some can come from a good place. I think this must be probably one of the most frustrating things. I honestly have no idea why it’s such a common misconception that pwd’s have no interest in sex or that it’s just not possible, and that you’re unable to have an opinion. Where did that mindset even start from ? Nearly every time my partner and I go out together people ask me the questions ie ‘does he want milk with coffee’ or giving me change in stores etc etc . I used to just assume they were uncomfortable around someone with a disability, but now I think it’s a general infantilism of pwd’s which makes me turn into a feisty bitch with my responses 😂
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Post by linda on Feb 23, 2020 5:10:07 GMT -5
I absolutely agree, @delight, it is such a strange misconception and must be so frustrating. I‘ve never witnessed that, but I can only imagine how frustrating it must be.
I once read about a medical student who got paralyzed in an accident. She reports that one of her professors from medical school said something like „You can’t continue your studies because your mental abilities are affected by your SCI“. I still can’t believe it, but that’s exactly how she reported it. No words left...
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Post by bojangler on Feb 23, 2020 9:47:22 GMT -5
Perhaps the isolation comes when we stay home, avoid contact or new situations and let our illness or disability become the main focus. Its tough though to force yourself out of the comfort zone. Can't agree more with this. My natural inclination is to withdraw and stay in. I like going out and doing things, but I will always favor my routine and the places I know are "low-drama", so to speak. But I'm trying to grow as a person and not be the hermit wheelchair guy that just stays in all the time and does the same things day in and day out. So I've started making a point to get out of my comfort zone on the weekends. It's been great so far, and I never regret trying something new. But I do wish I had companions to do more stuff with. The whole meeting new people out in the world thing still eludes me. But, baby steps .. err... baby rolls? I'll get there.
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