Curating the Quirky Life #DisabilityStories

Today, the Smithsonian’s National Museum of American History, the Kennedy Center’s Office of VSA and Accessibility, the National Archives, and many other agencies have been celebrating #DisabilityStories through a Twitter chat, various blogs, articles, and other virtual events.

As I’m surfing around looking at all these interesting sites and stories (see some of the links below), I’ve been thinking about how I could tell our story, museum-style. Museum curators frequently use objects to tell stories. This “material culture” provides physical evidence of the life and culture of a particular place, person, or time.

So, what objects – what kinds of material culture – would I use to curate an exhibit about life with my son? What are the things in our lives that stand out as shortcuts to describe some of what we do each day and how we interact as a family? What would a Quirky exhibit look like? Here’s what I’ve come up with so far: 


Diagnosis = Paperwork

Diagnosis = Paperwork.

Filing cabinets, binders, and I-really-ought-to-file-those piles of paper. 




Mom’s morning helper. 





Disney/Pixar and other favorite shows that are on constant repeat. On our TV. And in our brains.





A staple in the Quirky household since hands-over-ears began ca. 2004.





These lizards, sadly, are now extinct. These are the last pair known to exist. Since Target discontinued them ca. 2014, no other rubber lizard or snake will do. Beads have taken over as the favored spinning fidget.




Medications and supplements.

A rotating cache of pills and powders to help mitigate any number of issues. Some for him. Some for me.




Essential Condiments.

If the kitchen is without any one of these items, a grocery run is guaranteed.




Frogs (and one lizard).

A prime example of groupings of toys that must stay together, always and forever. Please, Do NOT Touch The Frogs.




Light switch.

Not to be confused with a light switch whose primary purpose is to send power to a light or a wall outlet. This one does that, too, but it’s main job is to stay in exactly this same position at all times. One up, one down. If someone else wants to use them for a different purpose, negotiation is necessary. 




Trampoline and Ball.

For sensory regulation, gross motor exercise, encouraging language production. And, fun. Mostly fun.



photo 1

Communication devices.

Despite advances in high-tech communication support options, the low-tech paper and pencil prompt seen here remains the best way we can communicate clearly with one another.



photo 2

Swimming supplies.

Goggles are mandatory, even if only worn on the forehead as a fashion statement.


How many of these reflect life at your house?

What item would be the centerpiece in your Quirky Museum’s exhibit?

Check out these great links for more #DisabilityStories and a celebration of the history and culture of disability in America:

National Museum of American History, #DisabilityStories

Kennedy Center’s Office of VSA and Accessibility

U.S. National Archives – Prologue: Pieces of History

EveryBody: An Artifact History of Disability in America

Disability History Museum

Museum of Disability History

“8 Ways in which the American Disabilities Act changed everyone’s lives”


Serenity NOW!

A loud THUMP reverberates through the house, jarring me out of sleep. My initial shock quickly fades to resignation. Guess I’m up now. The culprit is my kid in the next room, slamming himself into his bed again. One of these days he’s going to break through the floor and crash into the kitchen table below his room.

My alarm clock, set for 5am, apologetically reports the time as 4:30.

I shut off the alarm and force myself out of bed, as my brain mumbles:

What time is it? 4:30. It’s not late. No. No. It’s early, early, early.

My kid isn’t alone in his ability to call up song-associations to every situation. My brain finds them even when I’m half-asleep.

I grab my clothes off the dresser where I staged them last night and close the bedroom door quietly behind me. At least one of us can try to get back to sleep. My shower will have to wait. My only goal now: reaching the coffee pot downstairs before the boy emerges from his room. I pass his closed bedroom door–his light isn’t on yet, so I’ve got a few precious moments to start that caffeine remedy. Read the full post »

YouTube is My Frenemy


A person with whom you may have a lot of fun … who also has a vile and random dark side. (Urban dictionary)

YouTube is my frenemy.

YouTube can be such a supportive friend, one who assists me in my parenting duties.

YouTube provides my kid an activity to do when he’s bored. He’ll watch hours of roller coasters, of people performing crazy stunts or playing music, or repetitive clips from his favorite shows.

water-139249_1280YouTube gives our son a vehicle for showing us his likes and dislikes. Even if it means that during his search for the most awesome roller coaster videos, my teenager finds and lingers on some very cool water slide videos that also just happen to spotlight girls in bikinis.

YouTube teaches my son how to type and spell, operate a browser window and navigate search engines.

We’re really close, YouTube and I.

Read the full post »

Sounds Like Trouble

Like most kids, my son can hear the crinkle of a candy wrapper or the quiet clink of the cookie jar lid from two rooms away.

The difference for my child is that he is almost always wearing earplugs, and still his parents can rarely sneak a snack without his sudden appearance in the kitchen.   When I explain my son’s sound sensitivity to children (and not a few adults), I often use a Superman analogy. Just as Superman has super-hearing, this boy can hear minute details that others miss, and he’s hearing these otherwise-undetectable noises all the time. My kid’s earplugs help to muffle the millions of sounds his brain is trying to process, but he can still hear everything. Sound waves-multiple Read the full post »


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