The Becky Barbie Parody

IMG_5924I recently read an article about Becky, Barbies friend who uses a wheelchair.  Becky, unfortunately, was discontinued and when you find out why you might think it’s slightly funny, but also a little depressing.   The full article is here: https://www.pri.org/stories/2017-04-09/becky-barbies-wheelchair-bound-friend-was-discontinued-heres-why.  If you don’t want to read it I’ll paraphrase.  As it turns out, Becky’s wheelchair didn’t fit in the dreamhouse.   It couldn’t even fit in the elevator.  The only place Becky could go was the kitchen.   The article quotes “In the end, it was too complicated to redesign Barbie world to fit Becky.” So what happened?  They pulled Becky off the shelves.  We’re talking about a plastic doll house, but it’s actually a parody to real life.   The article also quotes “it speaks volumes about the way we think about disability . . . we talk about “fixing disability” instead of “fixing society”.

Here’s the thing – ADA doesn’t even come close to actually making things available to

IMG_6121Hudson.  They may be “accessible,” as in he can fit through the door, but usually he can’t participate or interact with the things inside.   He can’t reach things in the touch tank, he can’t see the animals at the zoo because the glass doesn’t come down low enough, or he can’t play at the train table because it’s too high or too low.  The solution can’t be to just continue focus on “fixing him” so we can get rid of the wheelchair.   There are over 3 million wheelchair users in the US alone.  You can’t get rid of the wheelchair user, we have to do more.   So we as his parents make the world available to him by unbuckling him, lifting him up, carrying him, modifying as appropriate, etc.   Most parents with kids with Cerebral Palsy will facilitate all these same things so their kiddos can experience life, often at expense of their own bodies.  And there’s no breaks and no help.  When we’ve looked into having him at a summer camp they all say “yes of course he can come” but . . . “you have to stay with him the entire time.”   Guess what?  I’ll be with Hudson 100% of the time this summer.  He relies on me for everything and honestly I’m going to need a break sometimes this summer.  I love being with him and am sad when he’s away, but being a caregiver can be exhausting.   Not to mention I’d be paying to attend summer camp with him for a week.  That’s not even a possibility if you have other kids and honestly it’s not something I’d pay money to do.   IMG_6111So he doesn’t participate.  Listen – I’m not complaining.   The point I’m trying to make is this. . .   caregiving is hard because the world isn’t setup for Hudson, just like the dreamhouse isn’t setup for Becky.    I don’t want to change him so he fits into the mold society is setup for.   I don’t want to wait until he can walk or stand or whatever to participate in these things.  I DO want to change society so it’s truly as available to him as to every other child.  I am passionate about him being able to fully participate in it.  That’s why I really want him to be able to go to summer camp this summer.  And not a special needs summer camp.  I want him to go with his sister (who can help keep an eye out on him).   And I want him to be with both neurotypical and non neurotypical kids.  I want the staff to get creative and actually include him without me having to facilitate everything.

IMG_5819So, you can imagine my joy at finding out that someone at the Morgan Family YMCA, a special education teacher, has the passion to pilot an inclusive summer camp program.   She bird dogged it through their risk management department and it took a month but we finally got permission for Hudson to attend camp!!   And no it’s not a camp where they’ll let him just “attend” but they will modify all the activities to make it fully available to him.   For example, when they play tag they told me they’d give him a pool noodle so he could reach out and touch the other kids.  We just met with her yesterday to come up with a full plan of how they’ll meet his needs.  I’m really really happy for him.  He cried when we had to leave and that was just after the tour.  If this goes well they are going to push for funding to make all their camps inclusive for kids with disabilities.   This feels like another step in the right direction – towards a world I’d like to see some day.   The wheelchairs are here to stay so let’s focus instead on making people with disabilities truly part of the community.   And let’s give some support to special needs parents who can’t just drop their kids off for parents night out or who can’t just get a babysitter to watch their kids for a date night.

So how can you help?  Encourage your kids to be creative and find ways to modify activities in ways that include kids with special needs.   Encourage them to ask questions about kids with disabilities.   Teach them to think about others needs early on so that when they grow up and become architects, interior designers, builders, owners of coffee shops,  teachers, etc. they can help create spaces for everybody in the community.  That’s how we are going to change things.  Just like this woman at the YMCA who met a boy in elementary school with a disability and decided then she was going to grow up and help kids like him.   Your children and grandchildren are going to make this vision possible.

Also, it’s CMV Awareness month so if you haven’t already please educate yourself.  https://www.nationalcmv.org/default.aspx

 

 

 

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Posted on June 7, 2017, in Uncategorized and tagged , , , , . Bookmark the permalink. Leave a comment.

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