5 ms·

My take, if you are a stranger and run into me and either of my (completely different) disabled sons: - Don't look at my disabled son unless you also look at m

by Jare 9y ago

My take, if you are a stranger and run into me and either of my (completely different) disabled sons: - Don't look at my disabled son unless you also look at me. Don't stare, just look at us like you're trying to understand what we are, not how we feel. - Keep emotional reactions hidden. Whatever you are feeling right now, I feel every minute of every day of my life. You don't hide yours because you don't care, you hide yours because you care not to make me deal with them along with my own. - Do not do anything about it without asking politely. Whatever I tell you, it is instant law. Do not even make the gesture to touch anything or anyone, unless given explicit permission or asked to please do so. - I know what I need to do and how I need to do it, I've been doing it every day for years; you have no idea, and if you think you do you become a potential danger or aggressor, and you will be treated as such. That's the baseline. With further contact, awareness and familiarity things will change.

emsy 9y ago
This sounds like you experienced some nasty stuff. Is this true or are you just cautious? From personal experience I’ve seen people not knowing what to do but never acting aggressive or offensive towards a disabled person, so I’m a bit surprised.
- GordonS 9y ago
  Just not knowing what to say or how to behave is quite common, but nobody will think I'll of you if you simply ask well-intentioned questions out of ignorance - parents of children with disabilities haven't always been so, and have probably felt the same as you at some point. But... a few people really are just hateful bastards. Mostly adolescent young men, but sometimes parents too. I'm sure you know the type - those that seem to take joy in hurting those they perceive as being weaker than them in any way. As a parent of a disabled child, it really breaks my heart thinking about how these things affect children with disabilities.
tallanvor 9y ago
It seems to me that with this list of demands you are asking to be isolated. No matter what you're going through, statements like "Whatever I tell you, it is instant law." are unacceptable if you want to be a part of society and have you and your children be treated even somewhat normally.
- fjfaase 9y ago
  It seems that the author is talking about occasions where a stranger steps in to 'give a hand'. I think you too would react like this, when a total stranger comes up to you and touches you, even if it was to remove some dirt from your coat? Appearantly, there are some people who seems to think that because a person is disabled, the normal rules with respect to touching, no longer apply, and that you are free to touch a disabled person, either to help them or to pad them on the head.
- Jare 9y ago
  > It seems to me that with this list of demands you are asking to be isolated I don't want us to be isolated, but safety is more important. Certain disabilities have little impact on casual contact, while others have A LOT, but it is important for people to understand that disabilities and the kind of problems associated with them may not be limited to what they see. When my autistic son was going through his phase of "I just run off carelessly", I had to walk with him restrained. Sorry, random passerby, I am not being too strict with my son, I simply can't afford to let him go off my grasp for one second because he will run into traffic and die. When you see my obviously weak other son smile at you, you may feel invited to touch his face. What you don't see is that his defenses are about as low as they can be, and your simple and loving touch may be enough to send him to the hospital. You don't mean it, but you may cause it. Of course a list like this means you are more isolated than "normal". When you have stopped your son inches away from a car, or you have held your son with 41ºC fever and his heart beating at 240bpm five minutes away from death, whoever doesn't want to understand that your needs are not "normal" simply has no place in your life, because the price may be a dead son.
  - tallanvor 9y ago
    I think normal people don't decide to touch a stranger's face, child or not. But if a child - disabled or not - comes up to a person and says hello and reaches out to shake hands, it's not inappropriate to reciprocate.
- tutts 9y ago
  I think that statement asks that you let the parent have final say over how you interact with their children, not that you cater to their every whim because their child is disabled.
sevagh 9y ago
>With further contact, awareness and familiarity things will change. I don't think you need to worry about further contact after this list.
- Jare 9y ago
  That's funny but wrong.
GordonS 9y ago
I'm a parent of a disabled child, and I'm afraid I think your attitude actually contributes to the problem - people will naturally be scared to offend if parents think and react as harshly as you describe. Try to put yourself in other parents' shoes - don't forget that you weren't always the parent of a disabled child, and it's possible you would have felt just as awkward as them. Yes, people sometimes say something that you find offensive or demeaning, but they mosty likely didn't mean it to come across like that. Instead of reacting harshly, try to subtely educate them - for example, if someone said "Oh, she's Down's Syndrome", I might respond with "yes, she has Down's Syndrome", with a subtle emphasis on the has - my daughter has Down's Syndrome, but she is not Down's Syndrome itself. Or if someone said "does she have a mild case of it?", I might respond by explaining more about the various issues and degrees of those. The point is, most people are ignorant of a lot of disabilities and surrounding problems - that doesn't make them bad people. And - when given the opportunity - most people want to learn more. I see it as "doing my bit" to help educate people, rather than reacting harshly and turning them off for good.
pfarnsworth 9y ago
This is the problem with articles above. The author of the article only speaks for 1 part of the community. The parent post here speaks for another part of the community. There is no authoritative voice. So you could follow the article's advice and offend the above parent. It's literally a no-win situation, which is why not looking is usually the best choice because it's hard to accuse someone of being offensive if pretend you don't even notice them.
- gowld 9y ago
  Right, you should never talk to anyone under any circumstance, since no two people are the same and you cannot predict how everyone will react in every encounter. Is that right?
  - pfarnsworth 9y ago
    Reductio ad absurdum
deleted 9y ago
[deleted]
laythea 9y ago
Jesus. What makes you think you are so special? And if you think you are, then you are part of the problem. I for one, shall not be changing my behavior to suit yourself.
- gowld 9y ago
  And that's OK! Parent poster was giving advice for people who want to be part of a human society. If you want to cut yourself from humanity and interact only with people you can extract one-sided profit from, that's your choice; and I suspect parent is happier that you go one your way, as far away as you can.

by Jare 9y ago

emsy 9y ago

This sounds like you experienced some nasty stuff. Is this true or are you just cautious? From personal experience I’ve seen people not knowing what to do but never acting aggressive or offensive towards a disabled person, so I’m a bit surprised.

GordonS 9y ago
Just not knowing what to say or how to behave is quite common, but nobody will think I'll of you if you simply ask well-intentioned questions out of ignorance - parents of children with disabilities haven't always been so, and have probably felt the same as you at some point. But... a few people really are just hateful bastards. Mostly adolescent young men, but sometimes parents too. I'm sure you know the type - those that seem to take joy in hurting those they perceive as being weaker than them in any way. As a parent of a disabled child, it really breaks my heart thinking about how these things affect children with disabilities.

tallanvor 9y ago

It seems to me that with this list of demands you are asking to be isolated. No matter what you're going through, statements like "Whatever I tell you, it is instant law." are unacceptable if you want to be a part of society and have you and your children be treated even somewhat normally.

fjfaase 9y ago
It seems that the author is talking about occasions where a stranger steps in to 'give a hand'. I think you too would react like this, when a total stranger comes up to you and touches you, even if it was to remove some dirt from your coat? Appearantly, there are some people who seems to think that because a person is disabled, the normal rules with respect to touching, no longer apply, and that you are free to touch a disabled person, either to help them or to pad them on the head.
Jare 9y ago
> It seems to me that with this list of demands you are asking to be isolated I don't want us to be isolated, but safety is more important. Certain disabilities have little impact on casual contact, while others have A LOT, but it is important for people to understand that disabilities and the kind of problems associated with them may not be limited to what they see. When my autistic son was going through his phase of "I just run off carelessly", I had to walk with him restrained. Sorry, random passerby, I am not being too strict with my son, I simply can't afford to let him go off my grasp for one second because he will run into traffic and die. When you see my obviously weak other son smile at you, you may feel invited to touch his face. What you don't see is that his defenses are about as low as they can be, and your simple and loving touch may be enough to send him to the hospital. You don't mean it, but you may cause it. Of course a list like this means you are more isolated than "normal". When you have stopped your son inches away from a car, or you have held your son with 41ºC fever and his heart beating at 240bpm five minutes away from death, whoever doesn't want to understand that your needs are not "normal" simply has no place in your life, because the price may be a dead son.
- tallanvor 9y ago
  I think normal people don't decide to touch a stranger's face, child or not. But if a child - disabled or not - comes up to a person and says hello and reaches out to shake hands, it's not inappropriate to reciprocate.
tutts 9y ago
I think that statement asks that you let the parent have final say over how you interact with their children, not that you cater to their every whim because their child is disabled.

sevagh 9y ago

>With further contact, awareness and familiarity things will change. I don't think you need to worry about further contact after this list.

Jare 9y ago
That's funny but wrong.

GordonS 9y ago

I'm a parent of a disabled child, and I'm afraid I think your attitude actually contributes to the problem - people will naturally be scared to offend if parents think and react as harshly as you describe. Try to put yourself in other parents' shoes - don't forget that you weren't always the parent of a disabled child, and it's possible you would have felt just as awkward as them. Yes, people sometimes say something that you find offensive or demeaning, but they mosty likely didn't mean it to come across like that. Instead of reacting harshly, try to subtely educate them - for example, if someone said "Oh, she's Down's Syndrome", I might respond with "yes, she has Down's Syndrome", with a subtle emphasis on the has - my daughter has Down's Syndrome, but she is not Down's Syndrome itself. Or if someone said "does she have a mild case of it?", I might respond by explaining more about the various issues and degrees of those. The point is, most people are ignorant of a lot of disabilities and surrounding problems - that doesn't make them bad people. And - when given the opportunity - most people want to learn more. I see it as "doing my bit" to help educate people, rather than reacting harshly and turning them off for good.

pfarnsworth 9y ago

This is the problem with articles above. The author of the article only speaks for 1 part of the community. The parent post here speaks for another part of the community. There is no authoritative voice. So you could follow the article's advice and offend the above parent. It's literally a no-win situation, which is why not looking is usually the best choice because it's hard to accuse someone of being offensive if pretend you don't even notice them.

gowld 9y ago
Right, you should never talk to anyone under any circumstance, since no two people are the same and you cannot predict how everyone will react in every encounter. Is that right?
- pfarnsworth 9y ago
  Reductio ad absurdum

deleted 9y ago

[deleted]

laythea 9y ago

Jesus. What makes you think you are so special? And if you think you are, then you are part of the problem. I for one, shall not be changing my behavior to suit yourself.

gowld 9y ago
And that's OK! Parent poster was giving advice for people who want to be part of a human society. If you want to cut yourself from humanity and interact only with people you can extract one-sided profit from, that's your choice; and I suspect parent is happier that you go one your way, as far away as you can.