Presentation by Kate Jirik, Ph.D., Historian, Scholar, Author and University Lecturer at the TASH 2024 Outstanding Leadership in Disability Law Symposium and Awards Celebration, September 11, 2024
I think the issue for me when we talk about sites of remembrance and museums about disability is, whose memories are we memorializing. Are we tracking history over time as told by the professionals who left paper trails that let researchers and others follow for one type of history? Are we preserving the memories of families whose loved ones lived in these institutions for people with complex needs? Are we preserving the oral histories of the people who worked in these institutions? How do we tell the stories from the position of those who existed in those places as they left few written or oral records? How are we curating the artifacts that have come out of these institutions? These are vitally important questions because the answers determine the public face of these memorials.
For example, this is a picture of a cabinet of toys at Pennhurst, taken by Dr. Nathan Stenberg. To many people, the assumption would be that they are examples of the toys the children played with. Or professionals might look at them as objects used for evaluations. As an institutional survivor, I would call them objects of coercion, used by professionals and other staff to coerce a desired outcome. “Do this thing and you can play with the toy for a minute or two” but then it will be taken away until you do another task. The toy was never the child’s. How do we reconcile the various viewpoints and center the ones of those most impacted?
Memories are difficult to make in the everyday sameness of institutional living. And with the constant turnover of staff, who serves as a memory keeper for a person living in an institution? I can say, “Remember when we went to see the musical, Matilda?” And my mom and I can share memories. In an institution, I would probably not have gotten to see the musical and, if I did, the person who supervised the outing probably no longer works there or wouldn’t think to reminisce about it to one of the group of residents. So how do we memorialize the memories that were never allowed to be made? How do we teach visitors to these memorials about the emptiness of the lives of the people who lived in these institutions? Do we talk about why the dehumanizing occurred? Do we look at the systematic structures in place that perpetuate institutional forms of care or are the artifacts enough?
I commend the work done to close down the institutions. My hope is that your work continues to create places where memories can be made, and memory keepers are there to share them.
I’m going to use a poem from my book, Living in the Abyss to help make my point.
Ordinary Things
It was the ordinary things that slipped my notice,
The soft smiles, the gentle touch,
The favorite breakfast, the afternoon snack,
The bright pink tutu, the superhero cape,
The sled rushing down the hill,
The regal yellow tulips shining in the morning sun,
The curling up with my Grandma’s afghan and a storybook,
The picnic in the backyard,
The fresh raspberries that jumped off the cane and into my mouth,
The birthday cake made just for me,
The joy of splashing in the puddles under a rainbow,
The spontaneous hug just because,
The love that wrapped around me because I was me.
These things slipped my notice because none of them belonged to me.
I had grim faces, utilitarian touch.
I had grape jelly sandwiches mixed with smushed green peas.
I had third-hand clothes, nothing that was just mine.
I was not allowed outside in winter, so I never knew about a sled.
I never saw a flower, only worn-away holes where grass used to be.
I never had a Grandma or a storybook.
I never had a picnic, it disrupted the routine.
Fresh fruit was not allowed, being too much of a hassle.
Nobody ever told me that I had a birthday, so there was nothing to celebrate.
Joy was not allowed, puddles being only a nuisance.
No one believed in hugs, they were an unnecessary aberration.
Love was nowhere, non-existent, and definitely not to be wasted on me.
All these ordinary things that people take for granted
Never existed in my world.
The implicit understanding of how the world was,
Was never mine, was unknowable, as unattainable as touching a star.
Yet there exists the expectation that I know these ordinary, wondrous things,
That we speak the same language of memory
That our experiences mirror each other’s
Without the realization that my mirror was shattered eons ago.
I have no magic potion to reconstruct your mental juxtapositions
As your brain cannot conceive of a world devoid of ordinary things.
So we pass as strangers, a great ravine between us
For you believe with no reservations that it is my job to understand ordinary things.
But I have no words for things I do not know.
One of the things I wish for in a museum or site of remembrance is a room of photos of memories that never got made. A birthday party with the image of the person behind the cake blurred out, a swing on a playground with the person blurred out, a personalized bedroom with the person blurred out, and on and on and on.