8 minute read
I'm at the doctor's.
This is not somewhere I go by choice. I have enough medical trauma to want to stay away from anywhere medical forever. But I've received a notice in the mail that tells me in order to keep living in the accessible place I am living, I need to go to the doctor to confirm that I still have CP...
...The disability I've had since birth.
I wait in the waiting room, trying to calm my nerves (trauma.)
An assistant calls my name, and upon seeing me in my wheelchair, gushes, "OH! YOU'RE OUT WITHOUT YOUR CAREGIVER! GOOD FOR YOU!"
This is problematic for so many reasons:
First, this assumes that a disabled person needs a caregiver to exist in public.
Secondly, If I had needed a caregiver, why was it seen as "good" for me to suddenly be without them?
But I just nod and say, "Yup."
(Because all the best comebacks come to me hours after the fact...and at this point in my life? I'm not brave enough to say any of them out loud anyway.)
Finally, I'm in the office with the doctor. I tell her the situation, even show her the notice.
"Where do you live?" she asks, perplexed. (No doubt she's wondering what kind of place sends out these notices to their residents...)
I tell her. "...It's accessible housing, for people with disabilities."
"Do you live alone?" she asks.
"No, I live with my sister," I tell her.
"Oh! Is she disabled, too?" she wonders, thinking of my earlier statement.
"Yeah, she is..." (Why my sister's disability status is relevant at my doctor's appointment, I have no idea...)
"...How does that work?" she asks, not even trying to hide her confusion at the idea of two disabled people living together. "Who helps you?"
"We help each other," I tell her.
There's this...weird demand out there...to consume content that involves disabled people being helped...and more than that...being helped by nondisabled people.
I know there are many people out there who would be super eager to read about the time a church friend stood behind me and helped me keep my balance for something like an hour while I (at 4'11") tried to make a basket in an outdoor basketball hoop.
I know there are people who would love to hear how a friend once walked me into our inaccessible church to use the bathroom, holding my hand the whole way. (The fact that I had felt pressured to choose one mobility aid, and left my crutches at home, would go unacknowledged. The fact that churches are not required to comply with the ADA would go unacknowledged.)
People love to hear how I crawled wheelbarrow-style - pulling myself with my arms - out of my grandma's inaccessible tub, my legs slamming on the ground when they cleared the edge.
(Look at how she overcame her disability! It's so inspiring!)
Disabled people helping each other?
It's just seen as weird.
We're othered, even more than we usually are.
This can be seen even in the prompts I still have saved from back when I wrote for The Mighty.
Related: Let's Talk About The Mighty
Write about receiving help in an unorthodox way.
The phrasing implies that we are always the recipients of help...and more...that perhaps our ways of helping each other are unusual or unaccepted.
But the truth is that often, the disability community knows how to help each other in ways that make us feel the most validated. The most safe. The most seen.
Tara and I help each other countless times each day. Some of these instances can be seen as typical divisions of labor in any household. (She does the dishes in the morning. I do them in the evening.) But some do not exist in nondisabled homes.
She does heavy lifting for me because I find it too strenuous. I make phone calls for her to help lessen cognitive fatigue for her.
Some instances are even more seamless. Pushing my wheelchair (when we went out in public back in the pre-pandemic days) allowed Tara stability when walking outdoors. It also spared me the exhaustion of being overtaxed. So, we both benefited.
We make each other's coffee. Tara makes mine because I cannot stand and pour water into the coffee maker without a disaster. I make her cold brew to alleviate her executive dysfunction and / or other cognitive symptoms.
The things that are beyond difficult for one of us are usually easy or doable for the other. We are happy to help each other with what we need.
There is no guilt. There is no shaming about how one of us needs to work harder to be able to do a thing. We understand limits and we respect them in and for each other.
|[Image: Cups of coffee, side by side. |
One reads: NONCOMPLIANT DISABLED PERSON
The second: UNGRATEFUL DISABLED PERSON]
Interdependence differs from codependency in that the help moves both ways.
Upon reading her essay, I wrote:
"... Our LIVES as disabled people hinge on interdependence. As she says, 'It is what we give each other because we WISH [nondisabled] people had given it to us.'
"Perhaps, that's why it is so particularly painful when we are ignored, dismissed, shut down and abused...because...for us? It is so second-nature to love each other this way...and it's like...aren't we worth this?
"We can't stay alive without help, none of us. But...nondisabled people experience the help they need, for the most part, without guilt, without an extra thought. It's like "of course" they deserve help. But disabled people are reminded time and time and time again...we don't.
"...To see this articulated. This essential piece of our culture so often misunderstood, so often framed as "too much"...because it's not. We are not too much. We love the crap out of each other. Because if we don't, no one else will."