8.04.2012

Republishing an old post as part of the Summer Disability Series Blog Hop

I'm happy to be able to take part for the second time in Meriah's cool Blog Hop series.  This is a post from Oct. 15, 2011, and it remains one of my favorites.

Reasons why feminism is a good prerequisite for having a child with Down syndrome

This week I read another memoir written by a parent of a child with Down syndrome.*  As is the case with many, many of these memoirs, the first half of the book was a story of a parent struggling with grief and sadness, with loss, with the horrible, horrible bummer of having a child with Down syndrome.  I was so disappointed.  Haven't I already read that story a billion times?  Aren't we tired of that story and ready for a new one?  And for goodness sake, can you not start the story with a chapter that's about how great things are now?  You know that new parents are picking that book up and thinking, "Oh, no--this is just as bad as I feared!"

At any rate, one of the things that struck me while I was reading is that I didn't have the same year-long struggle that many folks have to adjust to having a child with Down syndrome, and at least one component of why I didn't have to struggle that much is the fact that I was already a feminist when Maybelle came along.

So, reasons why feminism is a good prerequisite for having a child with Down syndrome:

Maybelle's sense of styleBeauty standards:  I'm already quite skeptical of them.  I want Maybelle to have her own, unique beauty, like so many of my students do.  I want her to look funky, distinctive--not to fit into the homogenous, stereotypically girlish mode.  Please see the picture on the left for an example of Maybelle's awesome looks.  I love all the ways that she's visually distinctive.

Activism:  It's not that I want Maybelle's life to have additional challenges, but long before she was born, or even conceived, I knew that she was going to be an ethical person in a fucked up world. What this means is that I'd always envisioned her as an activist, because activism is a necessary component of ethical humanity.  So she'll have some easy targets.  And we already have tools.

Recognition of social construction:  As you're all well aware, I'm into the social construction of everything. Before Maybelle was born I already had a scaffolding in my head of societal oppressions and how they operate.  Adding one new concept into this framework--the notion that disability is socially constructed, and that these social constructions can and should be changed--wasn't a paradigm shift.  It made perfect sense almost immediately.

What this means is that it was pretty easy for me to see Down syndrome as embraceable human diversity, not a problem, a flaw, a defect, not something to freak out about or want to "solve."  It's a component of who Maybelle is, a component that's embraceable.  All the bad beliefs and energy about Down syndrome are socially constructed.

Ready-made community:  Certainly our friends and families were pretty much, "Down syndrome?  Whatever--it's Maybelle!"  But the larger feminist community--my students, for instance--only needed the tiniest bit of coaching (like I did) to see things from a feminist disability studies perspective, and now they're all over it.  They see Maybelle and there's not a bit of weirdness.

    *This wasn't George Estreich's The Shape of the Eye, which I'll review here very soon.

    5 comments:

    Leisa Hammett said...

    Love this!

    Alison said...

    Thanks, Leisa!

    Danielle said...

    This is great! I love your comments about social constructs. I share your point of view on this matter, particularly when it comes to the rampant diagnosis of behavioral disorders. While some diagnoses are valid and biologically credible, many are labels given to the child who does not fit the social construct of acceptable behavior. Furthermore, people fail to realize that these constructs change over time and across cultures such that what is valued and acceptable today may not be so 10 years from now. I always enjoy your posts, and I miss Maybelle dearly! Squeeze her with lots of love for me!
    Danielle

    Alison said...

    Thanks, Danielle! We miss you, too, and I'm very glad you're working with kids in our community.

    Christine said...

    Alison,

    I'm so glad I saw this on Leisa's Facebook page. This is part of my story as well (as a sociologist and feminist), and I will begin blogging soon myself with some of that story. I spent a while feeling isolated because I was not grieving and could not find any voices that spoke to my perspective. Even more, I was saddened by the fact that many times the stories out there unintentionally reinforce the ideas that marginalize our kids in the first place. Another mutual friend actually recommended you soon after my daughter was born 3 years ago, and I should have contacted you then (especially since I recognized you from Vandy Women’s Studies). I would love to talk at some point. Thanks so much for posting this (again)!

    Christine