Disability perks is a phrase that I really stole from John Green, from "The Fault in Our Stars". He talks about cancer perks in it - about the things that people give to children and young people because they have cancer. It's an interesting concept, disability perks - especially when it comes to children.
The other day I went with one of my jobs to Seaworld, with 8 children and 7 workers. Two days later, one worker and I went with two children. It was exhausting. It was great.
It certainly wasn't the place for all of our kids - one of them really had a bad day. He didn't enjoy himself. Others weren't too fussed on Seaworld, and some of them absolutely loved it.
When I talk about disability perks - I am not talking about equal rights. I am not talking about accessible parking or accessible bathrooms. These are not perks - this is equality and basic rights. I'm talking about those little things extra.
I am talking about the people who give the children an extra bag of sweets, because they're in a wheelchair.
I am talking about the people who stop the characters in dress up to take photos with our kids, and shoo away all the "able-bodied" children.
I am talking about the fact that the children with the wheelchairs got the pathways parted for them like the red sea (but not those without the visible disabilities.)
Some people think those perks are sweet and kind. Disability perks kind of get under my skin a bit. I think it is just another marker of society not knowing how to treat people with disabilities and not simply seeing them as children.
But, am I going to actually say no to them?
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I thought the SAME THING when I read that in John Green's book! Actually, my thought was "Oh! That's totally like wheelchair perks!" Just yesterday the guy at our local grocery came out from behind his counter to give Simeon a free GIANT cookie. I don't really feel great about them. Mainly because those perks seem to stop once our kids aren't kids anymore. I think it must skew their perception of the world, ya know? I also worry about the perks for my second child. How will he or she feel when all the characters at Disney come right up to his/her brother and only pay attention to him? Or when Simeon gets a free cookie will he/she get one too? What if he/she doesn't? That kind of stinks.
ReplyDeleteInteresting thoughts. I personally always thought of that as a way for people to show that they sympathized with the disabled person's situation. Sort of a "You got the short end of the stick so I'm going to reach out a little further to compensate" thing. I figure for every "perk" there is at least one snub. Just people being different and reacting different.
ReplyDeleteI like that: for every perk there is at least one snub. I also feel that if we fight against the perks (although I honestly feel a bit strange about them), but we are also fighting against the snubs - we come off as a very hostile group of people and we will wind up with nobody but each other.
DeleteI saw that in the movie too. It reminded me of Bethany's cancer days. Imreallybappreciated those perks.I used to tell my other kids that having a sister with a life threatening illness did have it's advantages. They were able to do a lot of traveling, stay in beautiful Mc Donald houses nag get free admission to Amusements. Now we get the disability perks and I really appreciate those a lot too!
ReplyDeleteSorry about the iPad mistakes above!
ReplyDeleteGreat topic! I don't mind disability perks, except when people or institutions prefer to give them out instead of rights and equal access. Or, they use perks as cover for more substantive failures. Individual acts of generosity can be nice. When organizations do it I become more wary.
ReplyDeleteI think you make a good point. I think it can also be sometimes a person's way of feeling unable to know how to interact with 'that disabled person' but wanting to do something.
DeleteI suppose we did use the perks to our advantage that day when we took the kids on rides without shoes on and nobody questioned it.
'm kind of stuck in that intermediary state where there is something different, but it's not that noticeable. I do not receive many perks.
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