I've been in the disabled community for years and I still get yelled at for some things I say. Disability cuts across all different characteristics. And there is so much baggage with disability that you'll never please everyone. I know I'm extremely crictal of other people with CP. I mean to be, but I am. For me, it's because so many people with CP have been taught that they are special that sometimes I think they need some to say "Hey you're not that special, you're just a normal person" If that makes sense. Maybe some parents are extra critical of other parents. Just a thought
Some people think too deeply into others words. So deeply they come out on the wrong side. They pick people's thoughts apart to the point it's no longer your thought its theirs. You have every right to write down your experiences in a public fourm because everyone has a different experience even when they are involved in the same situation. I don't feel by speaking about your daughter and the disabilities she lives with everyday or the ups and downs of watching her deal with challenges that every other child may never know, is exploiting her. When you have a child with disabilities you do kinda become entwinded into one. With my daughter she is mentally delayed. I have to be her hands for writing and cutting paper or her voice because she can't really speak. I have to be her logic because her thought process isn't be always safe. So yes we are both in this disability together just on different sides. Maybe this person has dealt with his disabilities being exploited or maybe his parents have voiced their opinions about people exploiting their children to get money and now he is confusing your writing with those situations. Whatever the reason to their interpretation of your writing you should not hold yourself responsible for their misthoughts. People will take in what they will and that's something they own not you.
I echo the sentiment of other commenters and of Gilbert's version of one of the 4 Agreements..."what people think of us are none of our business." My immediate thought when reading the response is that gentleman is unfortunately viewing your writing from his experience (as we all do) but that experience must be very difficult. I'm curious what he would constructively suggest you could do to express and validate what you've been through.
I will add that one thing I have noticed in your writing is that you have never assigned emotion or perspective to others. In your account of Emily's birth especially, I noticed that you acknowledged that it was hard in a very different way for Allison, but you didn't attempt to give her experience and I appreciated that. I think that's unique because when telling a story- it's easy to try to paint a clearer picture designating emotions for each player like a script. You've also never seemed to tout yourself as an expert or even pat yourself on the back for your experience. You just share it...and you're not responsible for how that's received.
After going through a couple of family issues, my main takeaway is that showing real empathy towards other people is a rare gift. Most people would rather blame the victim or look away.
Your pain/anxiety in dealing with a situation is real and does not subtract from other people experiencing their own issues. But rarely do we grant each other the gift of understanding.
I spent a lot of time when I was younger judging family members that were dealing with issues like mental illness. Only when I truly starting empathizing did my anger melt away. It doesn't make the problems go away, but I am at peace and able to show love.
Excellent! Thanks for also sharing this part of putting yourself out there and what that means. I love how you processed the negative response and came to terms with it. Please don't let a negative response deter you from writing from your heart! It's YOUR heart and YOUR art!
I am struggling with some weird family issues surrounding my mother's recent death. I would love to write about it as a way to relieve the stress of experiencing unbelievable events and behaviors from some of my own siblings. I think I'm still in shock...not from losing Mom but from the unfortunate chain of events surrounding her death.
Lyle, my daughter has Prader Willi Syndrome and I've shared with many people about an approach of gratitude, purpose and strengths of these kids. To be a parent of a special needs child is an act of courage and compassion. My approach is...there's not just light at the end of the tunnel, there's light INSIDE THE TUNNEL too. Some people are skeptical, it's not the right approach for every parent. Brene is right. Don't worry too much what people say, just share your truth.
Keep it up Lyle
I've been in the disabled community for years and I still get yelled at for some things I say. Disability cuts across all different characteristics. And there is so much baggage with disability that you'll never please everyone. I know I'm extremely crictal of other people with CP. I mean to be, but I am. For me, it's because so many people with CP have been taught that they are special that sometimes I think they need some to say "Hey you're not that special, you're just a normal person" If that makes sense. Maybe some parents are extra critical of other parents. Just a thought
Some people think too deeply into others words. So deeply they come out on the wrong side. They pick people's thoughts apart to the point it's no longer your thought its theirs. You have every right to write down your experiences in a public fourm because everyone has a different experience even when they are involved in the same situation. I don't feel by speaking about your daughter and the disabilities she lives with everyday or the ups and downs of watching her deal with challenges that every other child may never know, is exploiting her. When you have a child with disabilities you do kinda become entwinded into one. With my daughter she is mentally delayed. I have to be her hands for writing and cutting paper or her voice because she can't really speak. I have to be her logic because her thought process isn't be always safe. So yes we are both in this disability together just on different sides. Maybe this person has dealt with his disabilities being exploited or maybe his parents have voiced their opinions about people exploiting their children to get money and now he is confusing your writing with those situations. Whatever the reason to their interpretation of your writing you should not hold yourself responsible for their misthoughts. People will take in what they will and that's something they own not you.
Good wishes and thoughts to you and your family.
I echo the sentiment of other commenters and of Gilbert's version of one of the 4 Agreements..."what people think of us are none of our business." My immediate thought when reading the response is that gentleman is unfortunately viewing your writing from his experience (as we all do) but that experience must be very difficult. I'm curious what he would constructively suggest you could do to express and validate what you've been through.
I will add that one thing I have noticed in your writing is that you have never assigned emotion or perspective to others. In your account of Emily's birth especially, I noticed that you acknowledged that it was hard in a very different way for Allison, but you didn't attempt to give her experience and I appreciated that. I think that's unique because when telling a story- it's easy to try to paint a clearer picture designating emotions for each player like a script. You've also never seemed to tout yourself as an expert or even pat yourself on the back for your experience. You just share it...and you're not responsible for how that's received.
Now I understand why the feedback hurt so much.
After going through a couple of family issues, my main takeaway is that showing real empathy towards other people is a rare gift. Most people would rather blame the victim or look away.
Your pain/anxiety in dealing with a situation is real and does not subtract from other people experiencing their own issues. But rarely do we grant each other the gift of understanding.
I spent a lot of time when I was younger judging family members that were dealing with issues like mental illness. Only when I truly starting empathizing did my anger melt away. It doesn't make the problems go away, but I am at peace and able to show love.
Excellent! Thanks for also sharing this part of putting yourself out there and what that means. I love how you processed the negative response and came to terms with it. Please don't let a negative response deter you from writing from your heart! It's YOUR heart and YOUR art!
I am struggling with some weird family issues surrounding my mother's recent death. I would love to write about it as a way to relieve the stress of experiencing unbelievable events and behaviors from some of my own siblings. I think I'm still in shock...not from losing Mom but from the unfortunate chain of events surrounding her death.
Lyle, my daughter has Prader Willi Syndrome and I've shared with many people about an approach of gratitude, purpose and strengths of these kids. To be a parent of a special needs child is an act of courage and compassion. My approach is...there's not just light at the end of the tunnel, there's light INSIDE THE TUNNEL too. Some people are skeptical, it's not the right approach for every parent. Brene is right. Don't worry too much what people say, just share your truth.