The Conundrum of Consent, Care, and Disability

I don’t give you my consent to touch me, but I need you to strip me naked, shower me, wipe my ass, and feed me.

A cartoon of a stick figure-type person with an inquisitive or befuddled straight-line mouth. The word “Consent” is above the cartoon in big bubble letters.

When I was in my twenties, I used to joke with friends that well over 200 people had seen me naked:

“It’s like I’m a stripper, but without the dollars in my G-string, collagen- injected body, thumping music, sticky stage, fawning audience, strobe lights, drugs and alcohol, steak and shrimp buffet, glitter…”

I’m being hyperbolical. Sometimes when I’m stripped down glitter hits the floor. Don’t ask.

I’ve met strangers while sitting on the toilet using the bathroom.

“Hey, Emily! This is _____. My shift is ending and she’s going to take you off the toilet.”
I stick out my hand for a fist bump or handshake in an introductory greeting.
“Nice to meet you,” We smile at one another. “Oh, and by the way, it’s the second day of my period. My pads are in the cupboard on the left.”

Every single day of my life I’m seen and touched in intimate ways without giving explicit consent. It’s a quid pro quo, a tit for a tat, an unspoken acceptance that if I want to get out of bed, use the bathroom, get dressed, and go to work to earn a paycheck that I must, in return, sacrifice my privacy and often my dignity.

Good ol’ Dignity.

When I’m hanging in the air in my ceiling lift and someone is power washing me with the handheld shower wand, like a piece of meat sprayed down with chemicals that you see in those Netflix documentaries, the definition of “dignity” seems almost funny.

I have grown so accustomed to lack of privacy that sometimes intimate situations get confusing.

For example, most gals feel a bit shy when they expose that first bit of shoulder or breast to their partner for the first time. Not me.

You know those scenes in movies when the woman excuses herself to the restroom to change into some slinky, silky, lingerie and reapply her deodorant before doing the deed? Fiction to me. The magic of sexual spontaneity and surprise finds itself exchanged with a lot of awkwardness, feigned confidence, or just plain humor.

Like that time in college when I went to a summer outdoor concert on a first date with this guy named Todd and it started down-pouring rain. Cold and shivering, my clothes were soaked through to the bone. Rather than running off together hand-in-hand to find quiet shelter from the storm, inaccessible spaces led us to a litter-filled parking lot where I asked him if he could help me change out of my shirt, as hundreds of people walked by. Before we even had the opportunity for a first kiss, he had to take my top off and haphazardly help me get dressed. Did I mention that this was awkward?

I have also grown accustomed to not giving consent and this gets weird too.

I often forget that I have a choice and that when I decline physical attention that I’m exercising a right that rarely gets the chance to get exercised. For example, there was this annoying classmate years ago who would get frustrated when I wouldn’t let her help me.

“Just let me push you! You’ll get there so much faster!”
“No thanks. I got this.”
She tries to push me. I hold the brakes to my wheelchair down. She gives up and walks away flushed with a good dose of ableism.
I unlock my brakes and smile at a good looking guy walking by.
“Hey, would you mind giving me a push to room 203?”
He smiles and nods yes.

Now that’s consent.

Not only do I have to make these sacrifices for daily needs, but I let people, like all of you folks reading this, into my world so you can somehow understand what life with a disability is like.

My hope is that this insight will allow you to recognize your temporary abled-bodied privilege and vote in favor of home and community-based services, long-term services and supports, the Disability Integration Act, and to vote against cutting Medicaid. I worry you’ll assume that I’ll get by with limited attendant care if you don’t see the naked “proof” of my situation.

“Did you know that Emily needs someone to wipe her ass?” You’ll say to some friends I graduated high school with.
“Poor girl. She can’t even wipe her own ass. Maybe I should call my Senator and ask him to support the Disability Integration Act?”

I actually hope for these types of conversations. This feels hilarious because pre-Trump, my standards for letting people into the nooks and crannies of my life were much higher. Pre-Trump, my essays only got shared with just the people who have seen me naked, which at last count was 337.

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