Tuesday, July 2, 2013

A Jerk with a Halo and Some Shabby Wings

(Should I throw in a clown nose while I'm at it? Purpose? Opposable thumbs? Scars or tattoos? Experience? A theme song like way back on Ally McBeal? Love? Some kneepads and a helmet? Resentment? Common sense? Or a winning smile?)

What are real people made of? What are stereotypes made of?

My favorite article ever written about a person with Down syndrome is titled 'People with Down syndrome can be jerks too.' To me this article and especially its title speak of great things. Although a personal story, the article offers to me a glimpse of a society that might just be able to see people with Down syndrome as individuals. As multifaceted, whole people who experience varied emotions, and whose actions are fueled by just as obscure, overt, honorable or selfish motives as yours or mine. People with agency.

Seems so simple yet it's not.

The article speaks to me of a potential for a complex inner life that is often incredulously denied people with intellectual disabilities.

Not a radical thought though, this complex inner life, thought processes, a reasoning beyond pure instincts, wants, and needs. Complex motives.

That stuff that makes you justify having a hamburger for lunch even though you'd sworn to yourself that same morning that you'd get a salad and start a new life, that makes you hate your job while you're thankful for your career, or kill a spider while carrying the ladybug safely outside. That stuff that allows you to pass that guy on the street who's waving around a sign asking for money for food without batting an eye and then pay $4 for a coffee you end up not drinking. That stuff that makes you fundraise for an animal shelter while wishing that your mother in law's driver's license will not get renewed so that she can't visit so often. That stuff that makes you hate someone you desperately love.

We can all be saints or jerks, towards ourselves and towards others, sometimes in the same moment. Sometimes we act on impulse, other times we carefully weigh our options. We make small decisions in everything we do that are guided by a complex mess of everything.

Life. We neurotypicals live it and more often than not aren't asked to explain ourselves, yet the general assumption doesn't seem to be that we acted on pure instinct, or based on some all-encompassing motivation. And even if we did, most times that specific instinct or motivation won't be seen as all we have or are, as our basic existence.

However, often, almost without anyone realizing, people with intellectual disabilities are dismissed as not having that complex mess and are flattened to a few basic emotions or motivations. People with Down syndrome are reduced to that one extra chromosome in ways that most of us never even think about. Little things. Insidious thoughts. Good intentions.

Closer to God in their innocence

The 21st is the chromosome of love

Not an evil bone in the body

Unable to tell a lie

Sweetness personified

Here to teach us what life is really about

If people with Down syndrome are not reduced to monsters as has been done in the past (hello Aristotle, you half-assed theoretician), then they're often reduced to special people, halo and angel-wings firmly attached.

Reduced nonetheless.

Subhuman or superhuman, both exist on the margins or outside of society. Only partially included or segregated and grouped together, perhaps excluded. Denied of an average, everyday, mundane existence, complex mess and all - the kind of existence many of us have and refer to as happiness. Disabled by society and its perceptions.

By a society whose rhetoric of ableism has become so ingrained into us, into our thinking, our worldview, our language, and our understanding, that even many of us advocates never pause to challenge or question it.

We don't lead in our thinking and rhetoric, we scramble to have those we advocate for lie in this bed we've made without wondering when the last time was anyone changed the sheets - and those sheets are in serious need of changing.


  1. Amen! I wrote http://www.cnn.com/2012/11/16/opinion/perry-down-syndrome for precisely the same reason.

  2. My niece has DS. She is not shy about telling you what she wants, or when she is done with something. She is only 3 but has a unique personality that brightens my day every time I am around her. She has changed how I look at all people. I hope for the better.

  3. hells yes!

    In the words of a friend of mine who used to work as a case manager for a local support organization:

    "Yeah, a lot of them are sweet people, but some of them are just plain bastards."

    People are people!

  4. I have 3 kids with Ds ages 25, 21 and 16. No angel wings here but they do give me a lot of attitude. People that talk about my kids being sent straight from heaven and the fact that they are so loving are obviously not raising a child with Down syndrome. Now when someone makes a comment about them I just smile and nod.

  5. My son has DS. He is 3. And he is a holy terror right now!! All of my kiddos were terrorists at this age, but this one puts Bin Laden to shame!!! The problem is, he's so damn cute while he's terrorizing us!

    This post was SPOT ON! Thank you!!

  6. My 14-year old daughter was nothing but angelic innocence until she could walk, which she didn't start until she was 3. After that, she could be sweet but it was strongly correlated to whether she got her way. Now I realize when she was in her "terrible threes" we had it good.


The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.