On the tarp: exploring cerebral palsy and intimacy
Credit: ©M-SUR / Adobe Stock
On the tarp: exploring cerebral palsy and intimacy
A story about cerebral palsy and intimacy: a couple explores what love and sex with cerebral palsy means for them and their carers.
Returning to camp, I lived with other mountain dwellers in a place wrapped in green velvet mountains, a piny vault set deep in the woods. Exiting the dining-room, Robin and I adjusted to the polaroid light of the early afternoon, the time of day when all of nature posses in confounding beauty.
Robin’s flexed limbs and uncooperative facial muscles had a mind of their own, and she was a keen observer with a quick wit. Steering around a section of cracked tarmac, her slender body jostled with the contours of the road.
Pausing, I leaned over the back of the wheelchair. “Are you okay?”
She swallowed and voiced a throaty, “Yeah.”
During downtime, Robin chose to sit on the wrap-around porch of the white house. Weather-beaten, the building resembled a grand old hotel with an ornate patio and shutters abutting windows. Female adult campers lived on the bottom level and female staff on the floor above.
Pushing against the steep pitch of the ramp, we reached the wide-spread deck. I locked the brakes on Robin’s chair and placed her floppy sunhat in the pouch behind her.
“Do you need to use the bathroom?”
Robin shook her head no. Whether feeding, toileting or showering campers, we became extensions of each other, void of silly notions of charity or lofty attitudes about one’s good deed. Whether camper or staff, the prevailing attitude was rooted in acknowledging the substance of each individual.
“Is this spot okay?”
Robin held my eyes, a clue she wanted to speak. She steadied herself and said, “Yeah. It’s good for eavesdropping.”
Taking a quick look at the surrounding people, I laughed. She was right.
I bounded down the ramp with ten minutes to arrive at the opposite side of the grounds. This was my second summer as an adult-unit leader at a camp for young adults with Cerebral Palsy, on top of five years as a counselor and one as a waitress. Well acquainted with the hidden shortcuts on the property, I ducked around the side of the building and followed a trail of matted weeds along the bank of the creek.
I walked with no other sound but the water to my left and rustling of ground cover under my feet. Further ahead, the waterway tapered and curved, hemming the barracks in teen camp. The infirmary sat at the far end of the horse-shoe shaped path.
Scaling the rise from the water, layers of voices and music spiralled out as chaotic but welcoming sound. Reaching the flat ground, I squinted through cut-outs between branches, spotting the bungalows embodying teen camp. Clear of the bramble, I waved to Jackson and Teddy in the distance.
They sat lounging under a pavilion alongside their cabin. Jackson’s body pitched forward at a steep angle, a snug seatbelt separating him from the floor. His head-tremors made reading difficult, so his bunkmate sat relaying the news with Jackson’s nose inches from the reverse side of the page.
Cutting across the field, it was a lemon lit afternoon, and I shaded my eyes with my hand. Debbie waved as I approached the screened porch of the infirmary. Trays of labeled shot-glasses covered the table which meant she was sorting dinner meds. Passing through the mesh door, I stepped onto a spick-and-span porch.
“Hey. Do you need a hand?” I asked.
“Sure. If you don’t mind, fill those last two trays with fifteen cups apiece. Hey, how was the trip last night?”
“It was good. We were seated in an area upfront with lots of room for wheelchairs. We even spread a few blankets in the grass.”
My mind flashed to the concert in nearby Saratoga where we fell under the spell of the steely voice of Sturgill Simpson. Under an inky canopy of stars, it had been close to midnight when we returned to camp.
“Making my morning rounds for meds, I saw lots of groggy-eyed faces.”
“Yeah, some folks are catching a nap right now. Any patients inside?”
“Just visitors today. Nobody’s in house.” Debbie checked off a box on her med list. “Luce, I wanted to talk to you about Joe and Linda.” She let the pencil slip from her fingers. “I know you visit Joe at Colar Hospital and sub as a weekend aide for Linda during the year.”
“Okay. So what’s up?”
“It took thirty-four years, but Linda’s mother finally relinquished all guardianship rights. Linda can legally represent herself now.”
I grinned. “About time. If you can handle a college course, you shouldn’t have to have a legal guardian.”
“Of course Joe has no family, but since he’s mentally competent, the state granted him self-guardianship when he turned twenty-one.”
Done with my task, I slipped the extra cups back in the dispenser wondering where the conversation was going.
“Joe told me he calls you daughter.”
The corners of Debbie’s mouth tipped up.
“Part of that’s because we’re both Italian, and part because Joe has been good to me. I met him as a fourteen-year-old. He’s got twenty years on me.”
Debbie picked up a pill vile, shook it, and huffed.
“I’m out of Tegretol. Hold on. Be right back.”
I flopped into a low-slung Adirondack chair thinking about Linda and Joe. They watched me waitressing tables in adult camp and detected a secret hole existed inside of me. As the youngest member of staff, it took a while for me to find my place. I suppose growing up in a city housing project with a high strung mother and two quirky brothers transmitted further strife.
With generosity, the discerning couple drew me in, sought my opinion, shared their humor, and challenged me with questions. Linda spoke with an elongated drawl, Joe expressed himself in a blizzard of words. Sitting cross-legged with the ankle of her top leg wrapped tightly behind the calf of the other, Linda’s stiff palms pressed into the cushion of her chair. Joe braced himself by hooking each thumb around the metal tube of the armrests, legs bent at the knee, leaving a narrow-angle between his heels and the saddle of the wheelchair.
Returning now, Debbie stepped through the threshold with a canister raised triumphantly in hand. “Sorry for keeping you waiting so long. I ended up digging through a supply closet for these.”
Popping the lid, she tipped a couple of pills into her palm. Three tablets kerplunked in different cups and Debbie pivoted around.
“Sexuality isn’t just about our bodies; it’s a part of our identity”
Ilanna Sharon Mandel
Cerebral palsy and sex: it can be complicated
I sat upright in my chair. “So, tell me. What’s going on with Linda and Joe?”
“Now that Linda’s her own guardian, they’re free to be sexually intimate.” Debbie pushed back a tray and leaned on the table edge. “They want to have sex. Sex with CP.”
This was a new request in adult camp, and I let the thought settle. Without legal barriers, Linda and Joe were free of agents capable of thinking about their own interests.
“Yeah, it makes perfect sense.” My mind began devising a sequence of steps to help them have sex with cerebral palsy. “What about birth control?”
“Linda started the pill in June.”
“So the idea of them having sex isn’t brand new.” My body leaned forward meeting Debbie’s eyes.
“It’s not, and they requested that you be the one to assist them to undress and stay in earshot. Linda’s uncomfortable having a male staff member at hand to undress Joe. He said he trusts you, and he’s okay with everything if you are.”
I felt awkward for a moment thinking about Joe, but pushed past it. “I get why she would feel uneasy. I can arrange for them to have a room to themselves, but the adult quarters are far from private.”
“They asked that a tarp with two mattresses be placed in the grass, in some remote place on the property.”
“That’s actually safer. There’s no possibility of a dangerous fall from a bed. I’ve transferred each of them onto blankets in the grass. Getting Joe back into his chair without help is tricky.”
“We’ll have walky-talkies on hand. The plan is that you and I wheel them over to the location. Then I’ll leave, and you’ll stay.” Debbie studied me. “What are you thinking?”
“I’m trying to figure out what form of motion they’ll use to explore each other. It’s asking a lot of their bodies.”
“You have a good idea of their range of movement from helping with their daily living needs.”
Debbie’s brow set like checkmarks. “Can this work?”
“Honestly, they would each have to sway and rock to build the momentum needed to move their body. Their limbs are flexed, there’s lots of involuntary movement, and having clenched hands puts them in a tough position.”
“Yes, cerebral palsy and intimacy and sex is a complicated situation. But cerebral palsy sex is possible and everyone – disabled or not – should not be denied consensual sexual intimacy” Debbie bit her lip.
“And it goes way beyond sex with CP,” I said. “It’s exercising deliberate movement and making enough body contact, so they’re not left feeling let-down and hurt. They’re a real intimately connected couple. They should be able to have a sexual connection as well.”
Debbie exhaled slowly. Her gaze remained fixed on me. “They mentioned the possibility of needing assistance. They may choose to ask you for help.”
I thought for a moment about cerebral palsy and intimacy and how hard society makes it for some people with cerebral palsy to have a healthy and active sex life. “If you think about it, it’s no different from the other physical supports we provide in their lives. For Linda and Joe, this is a genuine supplemental movement like their need to be bathed by someone.”
Glancing at the clock, I noticed it was time to return to adult camp. I yanked myself out of the steeply angled chair.
“Do you need some time to think about this?” Debbie asked.
“If they talk beforehand, and know what they’re comfortable with, I could follow directions and shift their bodies. I could also guide them hand-over-hand.”
Debbie’s chin lowered, and she looked at me through her lashes. “So you’ll do it?
“Just give me a heads-up about time and place. We’ll talk more, later.”
Susan Dashiell is a middle school teacher in Bloomfield, NJ who enjoys the quirks of adolescence.