What did you say? « Terrible Palsy

What did you say?

January 23, 2008 at 2:10 pm | In Ranting, The things people say | 6 Comments
Tags: disabilty, perceptions, The things people say

I’ve been pondering something that Dave said a couple of days ago. He did a follow up post here.

I’ve often had to shut my mouth despite some ignorant comments as my hubby says that I get offended too easily. He reckons that people aren’t intentionally offending me – that they are just ignorant. And that makes it okay.

My argument back is how are you supposed to indicate to people that what they say is ignorant or offensive, if you don’t say anything?

How does that stop them from being ignorant or offensive in future?

I don’t doubt that some people only have well meaning intentions – but does that change things? Does it really make it okay?

As an example, I have stood there while people have told Moo that they will “fix” him.

Last time I looked, he wasn’t broken.

I struggle with the constant need to fix him. To change him. He is perfect how he is.

Yep, I still do therapy with him – ABR. But I don’t do ABR to “fix” him. I do ABR because it makes him more comfortable. Because it increases his volume in his diaphragm, his lungs. This in turn has made his breathing easier. He is less susceptible to illness. Because he isn’t struggling with his breathing, he speaks better. I do ABR because it helps him stay regular with his bowels. I do ABR because it has assisted with minimizing his extensor reflex. So he no longer shoots himself out of my arms without warning, saving him from falling and saving my back.

I don’t do ABR to fix him. Cause the kid ain’t broken.

Yep, he is perfect. And it’s not my problem if you can’t see that.

6 Comments »

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I often bite my tongue as well when people say things. Lately my own mother told me that if you dress your special needs child well, do their hair, keep them looking clean it is better. She doesn’t understand how some parents of disabled kids let their children walk around in sweats etc. My OWN MOTHER said that! Sometimes I feel like the only sensible person on the planet. Aliens have abducted the rest!!
I was really brave the other day though, and I noticed at my bank someone was parked in the handicapped stall without the right plates, and being the brave outspoken person I am, I marched in the bank and demanded to know who was illegally parked and taking not just one but BOTH of the spots. People just don’t think.

Comment by Amy — January 24, 2008 #

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I love……….absolutely love how you put things. That is exactly right. He is perfect the way he is!!!

And I wish, I had the ability to confront people (I do occassionally, and I feel much better about it!) but most of the time all I can muster up is the nasty look to give them.

Comment by Melanie — January 24, 2008 #

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I don’t think there is anything wrong with speaking up. But, I cringe when I read that someone has done it in a rude or abrasive manner. The whole point is to say it in a way that people will remember the mistake and not make it again. You don’t want them to go home to their spouse and say hey yea a mother of a DS kid called me a nasty name today at the Super Market, just because….. I have a problem with people being rude because they feel they have a right because they are the lost group of the world. Please, we all have experienced it at one time or another. Just handle it in a mature, adult manner.
Paula

Comment by paula — January 25, 2008 #

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I also appreciated Dave’s posts. It helped me make sense of my feelings. Sometimes somebody will say something and I’ll know that it makes my skin crawl, but I cannot put in words exactly why. Reading about other people’s experiences helps validating that sense of unease.

Doing something about it is another matter. I’m the kind of person that is so stunned by the comment that my mind goes a complete blank. I’ve worked out standard answers to the most offensive comments, because I agree that people should know that they have overstepped a line and because I want them to remember my answer as another valid point of view rather than a knee-jerk hurt reaction.

Often though, I can just see that I’ve wasted my breath.

Comment by Nelba — January 25, 2008 #

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I was just reading on another blog about a similar issue and this discussion is very helpful. I have a disability and so does my nephew. I’m not a parent so hope you don’t mind my joining in. But I wanted to add that I can tell you that it is much more difficult for me as an aunt to handle offensive comments made to my nephew than ones that may be directed toward me.

Comment by Ruth — January 26, 2008 #

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This is the same reason I changed the name of our web site to ‘better than normal’. I also feel that daniel is perfect the way he is. Is he normal? Hell no….he is better than normal.

Comment by Lonnie — February 4, 2008 #

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