Then another friend asked what that was. Then someone else posted the question on their Facebook wall. Then a bunch of people chimed in, and eventually the whole thing left me wondering what it really means to be a disabilities snob.
Ok, so snob connotes superiority and a condescending attitude toward someone believed to be of a lesser position. But I don’t think that is how Kim meant it. I think she was saying it like I might say "Masha is a shoe whore." No need to get all stuck on the word whore, know what I mean?If I were a disabilities snob, would I think my kids are better than kids with other disabilities... or even better than some other kids with Ds? Would I insist on all inclusion, all the time? Would I cringe when I see my girls dancing in a room full of people just like them... only grown up? Would I do my best to raise them to not want to be part of the "special clubs"? Would I feel insulted if a local church invited my girls to come to a special activity night for people with disabilities?
If yes, then I am definitely not a disabilities snob because none of that is where I am at these days.
I can see how Masha and Autumn could grow up to be super friends to other people with disabilities like their own or even more profound... The two of them go beyond tolerating their sister... they include her. I think M&A can move in both circles... perhaps sometimes learning or playing in a fully inclusive environment and other times doing the same in a group designed just for people with disabilities. I want Masha and Autumn to spend time in both worlds because I believe that is how they will bridge the gap to make it one world.
Right now Masha is in Gen Ed Kindy which is a lot of work and stress for me, and so far I am not sure it is the best way for her to learn but she sure is coming along. I wish though that I could find some extracurricular activities, like a dance class, that was only for children with special needs. Why? Why not fully include her all the time? Because sometimes it would be nice to just have her be exactly who she is without the pressure that comes with standing next to The Ableist.
The same goes for Autumn... she is in a reverse-inclusion preschool, which means there are more typical kids in her class than children with identified special needs. But it would be awesome for her to have someplace to dance, or play, or just be herself with a bunch of other kids who aren’t seen as The Species Typical.
That is why in some ways, our house is the best place of all. We have five young children, boys and girls, typical children and those with differing needs whose levels range from mild to profound depending on the activity. Sometimes they all get on the table and dance together, or they all scream it up tearing apart the living room, other times they break off in natural groups... that change players depending on what is going on... Masha and Autumn sometimes keep up with their brothers playing ball or wrestling, other times they are perfectly happy to chill out with Kimani (ok, so no one ever really chills out with Kimani because chill is just so not her, but you know, they play with her). It is a place where they can all just be themselves, where they get to decide when to be "fully included" and when to be "self-contained".
The bottom line is that I think most adults with Down syndrome are on the cusp... There are times they are interested in and want to be a part of typical age appropriate activities, and there are times when they would be perfectly happy to spend a Friday night at home watching a Disney movie rather than hanging out at the local club drinking Margaritas. To try to push or pull them one way or the other, that to me is what it means to be a disability snob.
There are a lot of people talking about these issues, a lot of talk.... lots and lots of talk. But not so many voices from the ones who are walking the crawl. I want to hear from those parents. What do they think it means for their child to contribute to society? What do they think it means to be a disability snob? What do they think of ableism?
8 comments:
TUC- I would love those three questions to be answered by one of the self advocates that spoke at the WDSD UN Conference.
D
We are a lot like you! 5 children, all ranges of abilities! I want Arina to be wherever she learns the best. She is currently in a special Ed preschool with some "typical" kids interspersed! Her dance class was not a special needs class. Of course I ended up pulling her from that because she was all over the place! I think we'll wait a year and try again! I hate the contributing to society sentence. Why does contributing to society have to mean having a job? My son has changed so many people! Brightened their lives and changed their way of thinking. To me that's a huge contribution to society! Bigger than any job or material thing!
Kieron Smith in his book 'Politics of Down Syndrome' quotes Sunny Taylor thusly: "disabled people [...] define independence differently, seeing it as the ability to be in control of and make decisions about one's life, rather than doing things alone or without help".
While I understand that the quote has nothing to do with being a snob or not (I have to admit, I don't really understand the question, or what the answers might signify and to whom), understanding it as a possible future reality for my daughter has made ALL the difference.
See, I refuse to take into consideration that there are two worlds. There can never be just two worlds, there have to be a multitude of worlds, and I want my kid to have the opportunity to be a part of as many worlds as she likes, while simultaneously always being herself, whatever that might mean. I mean, if I'm allowed to be the person I am (and I haven't been to jail yet, no one's threatened to take my kid away from me, but I have been told to not to return [ever] to one restaurant and several bars), what would stop her? I think that a lot of this does come down to attitude, but not one's attitude about disabilities, rather about life and what it means to live it.
Make any sense at all?
Here's the thing... I think the question of "disability snob" came about by accident... it was a simple comment made without any huge significance attached to it (like shoe whore, where whore doesn't really mean whore) but then it got talked about so much that meaning has developed from it... do we want our kids to "fit in" so much that we somehow "snub" those who are more different than our loved ones? And to some degree some of us do...
And yeah, what you said makes sense :-)
this truly is a interesting topic...I think it is interesting how you can have 10 people and those 10 people will all have a different interpretation of a comment or phrase...I am still a disability snob in the sense that I only care about my daughter...that is it...nothing more nothing less...she is in a preschool with kiddos that have identified special needs or disabilities and typical learning kiddos...she attends a typical tumbling class...and she is my home day care with typical children...but I will do what is best for her...if she thrives in fully inclusion school that is where she will be...if she thrives better in a special ed class then that is where she will be...I am a snob because i only read about Down syndrome...I prefer having friends that have kiddos with Down syndrome...I go to doctors that specialize in Down syndrome...and I truly believe that my child is much cuter then any child i have ever seen...that is what make me a snob...smiles
as always GREAT post!!
You seriously just made me laugh out loud. She is dang cute, so I can't blame you for being a snob when it comes to her.
My son Marcus has Down syndrome and we go to the bar together, often he does shots of lemonade with the bartender.
He works a part-time job in an environment that is not “special needs.” And he takes acting classes at a center for developmentally disabled adults.
So, obviously, I agree with your approach. He needs a little “inclusion,” a little safe time with his peers, a little country and a little rock-n-roll. Don’t we all? And on that note - Who doesn’t want to go to the bar one night and watch a Disney movie the next?
Love this post! "I want Masha and Autumn to spend time in both worlds because I believe that is how they will bridge the gap to make it one world." Excellent!
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