It’s dark except for the previews on the movie screen and we are all dressed up like bridesmaids, with oversized, light-up engagement rings that blink on each faux bridesmaid’s finger. We hustle to get situated before the movie, Bridesmaids, starts. Security has already asked us to lower our voices, and they approach us again to turn off the rings. We giggle loudly and pose for a quick picture before we dim the rings and take our seats. Just as the shutter clicks, the usher confiscates the camera stating, “No pictures or video allowed.” We all protest: “The camera was pointed at us, not the screen!” The usher gives it back with a strict warning, and we comply. My friends help me transfer to a seat and park my wheelchair in the empty spot next to me. The first scene opens and out come the candy and the flasks, discreetly smuggled in under my chair. We pass them along throughout the film while we laugh ourselves silly.
It’s just a typical night out for the Clitorati.
“We were like celebrities, dressed to the nines and a little bit full of ourselves,” recalls my friend Erin. “We strode along like we owned the place … smoking where we weren’t supposed to, taking photos where we weren’t supposed to, and, finally, you riding the escalator in a wheelchair like you’re not supposed to! —‘What am I going to do? Break my neck? Oops, I already did.’”
Erin is our queen. She created the group and gave it its name, a play on the infamous Illuminati, a secret society whose aim was to create “a state of liberty and moral equality.” Erin says the women of the Clitorati have a similar goal. “A state of temporary liberty to go a little wild and enjoy unconditional support to be seen as equals in all aspects of our lives.” For me, discovering a group of ladies who understood the trials and tribulations of being a mom, wife, and a woman meant I wasn’t alone. It was liberating finding my people. And the ladies of the Clitorati are definitely my crowd.
Meeting the Tribe
I have my daughter, Zoe, to thank for my membership. As a new mom, I was completely overwhelmed with trying to do everything right, and had little time or energy to meet people. So when my then-3-year-old wanted a playdate with another kid who attended her preschool, I popped a wheelie at the chance. My life had evolved from jet-set pseudo-celeb to teacher, wife and mom. It felt like everything revolved around the kid, and I was losing sight of myself. I couldn’t even get a shower alone without her fussing at the door. I desperately needed to find someone who understood the transformation I was experiencing and could help me strike a balance. Accessibility was always my concern, but I did not want to address it before I got to know someone. It was a given that I would host the playdate.
That is how I met Kristen, my first “mom” friend and the one who would introduce me to this tribe of unruly women. Comfortable in my own skin, I still found myself worried. Would I be cool enough, have the right snacks, be able to relate? During the mom part of our preschool’s “Mommy and Me” period, Kristen always talked about organic foods, the problems with plastic, and alternative discipline. She was over a decade my junior, a vegetarian, and her husband had dreadlocks. They were both young, hip, and the epitome of cool.
Kristen sensed my apprehension. I kept a tub of Red Vines candy on the kitchen counter, and silly as it was, I somehow thought she might object to it. I couldn’t have been more wrong.
“I love Red Vines,” said Kristen. “Once I ate a few,” she confided later, “I think we both realized we are not that different.”
During that first encounter, Kristen and I talked about our birth and breastfeeding experiences, raising kids, and how it sometimes felt like we were single parents even though we had husbands. It was standard “mom” stuff, but the conversations were honest and vulnerable, and the laughter was real.
“I remember feeling so relieved to meet a mom like you,” says Kristen. “A mom I felt like I didn’t have to pretend around.” And I felt exactly the same way.
Kristen was sure I’d fit in with a larger group of moms she hung out with and invited me to tag along to what they called Mom’s Night Out. That’s when I first met Erin, the organizer of the dinner.
“I don’t remember hearing too much about you,” says Erin. I really don’t even remember knowing you used a wheelchair. Mostly, the vibe was like, don’t mess with Ellen. You sat across the table from me, and I still didn’t notice the wheelchair. What I did notice was that you were outspoken, brash and loud. But you also smiled — or should I say grinned — and your eyes sparkled when you threw a martini-soaked napkin in my face to make a point. I knew I had met my match.”
Erin knows that women desire to be accepted for who we are, to share an intimate connection and quiet conversations. To fulfill those needs, she coordinates our monthly outings for moms that include delicious dinners, fabulous game nights, and themed movie adventures. The large events are a wonderful place to celebrate and blow off steam, but we needed a more intimate meet-up to deal with the realities of life that plagued us all. That led to Wine & Whine, a small offshoot of the Clitorati.
The core faction of W&W includes Kristen, Erin, Nel, Grace, Martina, Molly, Andrea, and myself. We have met almost weekly for over 10 years to share our joys, sorrows, dreams, and desires. We are all married, or have been. We are all moms, and our ages span three decades. We are friends because we can say to the other, “What, you, too?” We find comfort and support knowing we are not alone in our journey.
Andrea, my hero and mentor, has inspired me with all she has done. She is a freelance writer, a speaker, and a mom extraordinaire. She started and completed her book on raising a child with a disability, Happily Ticked Off, while I still write mine in my head. Funny thing, though, like all the ladies in our clutch, I’ll say Andrea is my champion, but Andrea will swear I am hers.
“Ten years ago,” she tells me, “my son had just been diagnosed with a disorder I was terrified of. What would happen to him socially, academically and physically? What would happen to me? Your transparency on what it’s like to live with the unexpected gave me the shot of encouragement and hope I needed to survive a terrifying time for me. You surrounded me with friendship and took me on adventures with four other women who changed the trajectory of my life in more ways than I can count!”
The support all of us have received from one another has helped each of us not only survive, but thrive. We constantly deal with the issues that arise with marriage, divorce, dating, raising kids, dealing with teachers, illness and life in general. Someone once wrote, “You can laugh like a fool in front of good friends, but you can only cry like a baby in front of your best friends.” These are the ladies I cry with, the ones more acutely aware of what I experience as a woman with a spinal cord injury. My friendships with these women are not about my wheelchair, but my wheelchair is a part of them.
I was the first woman in a wheelchair most of my now-friends had ever truly gotten to know, and looking back, almost all admitted to some degree of apprehension about how to address the chair. Molly remembers coming over for a Halloween party with her daughter. “You were in a wheelchair and I’d never hung out with anyone ‘like that’ before,” she says. “When we got to the house, there was a ramp next to the front door, and I wondered about so many things. I was most concerned about how much I should I help you.”
“I remember wondering,” says Grace, “do I acknowledge the chair? Look at it? Pretend it’s not there? As if the chair were a lazy eye. I wanted to do the ‘right’ thing, but what exactly was that?”
In both cases, we quickly found mutual understanding. “As soon as I met you, none of that mattered,” says Grace. “Your presence was huge — bigger than your disability — and, of course, we hit it off immediately.” Adds Molly, “Of course, there was no need to be scared. You greeted us the way you’ve been greeting us ever since … with a big hug, a ‘Hello, doll,’ and warmth enough to melt all my worries away.”
Many people quit seeing the chair once they get to know me, but my closest friends never forget I need the wheelchair for mobility. Their understanding of my accessibility needs make them more amenable to hold our sessions at my house. They have learned how much easier it is for me in an accessible environment, and they are keenly aware when others are not as thoughtful.
“People can forget to be considerate,” Grace acknowledged to all of us in one of our sessions, “and I find myself getting defensive about the venues we meet at. Friends who plan birthday parties at bars where there aren’t tables for Ellen to sit with us at, or choosing seats at a comedy venue where Ellen has to make an incredibly long trek to the front of the theater just to get to the back of the theater where everyone is sitting… five feet from the stairs they were able to climb.”
But knowing my needs and the obstacles that I have to regularly face has a deeper impact on our friendships than simple accommodations. They accept the fact we must argue for the appropriate accommodations, or double-check if something is really accessible. They even accept the decision to leave if environmental factors wreak havoc with my ability to function. They accept me, warts and all.
Martina, our longtime comrade but latest travel companion, became acutely aware of some of the physical challenges of life in a chair when she broke her ankle and had to rent a chair with wheels. “It was not even a standard wheelchair, but I scratched nearly every doorway and trim just trying to enter and exit,” she says. “Forget about being able to rotate it in the bathroom! I don’t know how anyone in a wheelchair manages when so many places lack appropriate accommodations.”
On our last cruise, Martina was really miffed when a lack of access made things awkward. “We were on a Carnival cruise and dressed to the nines as Mrs. Claus and her Naughty Reindeer for the Halloween costume contest. We got tagged as finalists, but we weren’t even given opportunity to display our amazing costumes with all the other contestants who were being showcased on the ballroom stairs!”
Traveling together also brings a whole new level of intimacy to friendship — especially when one’s body has a mind of its own. On our first cruise together, my friends went to extreme measures to keep me warm. “Four of us huddled together in an interior room. It was like a high school sleepover,” says Grace. “The room was chilly, and you had trouble warming up. I remember you were cuddling with a hairdryer because it was cold, and me, falling asleep wondering if I would die that night by fire or electrocution. It’d be worth it either way.”
On the flip side, Kristen got a first-hand introduction into the realities of dysreflexia when the two of us vacationed together. I had never left Zoe before, but the opportunity to scuba dive in Cozumel presented itself, and I was beginning to realize how important it was to have friendship activities that did not revolve around being a mom. So, we packed our bags and didn’t look back. Along with scuba diving, there were drinks on the plane, shots by the pool, shopping, shows, and a horseback ride through the jungle that nearly killed me.
“The tour guides were truly ignorant of the fact that we needed the ride to be short and sweet,” remembers Kristen. We only paid for the shorter version, but they insisted on giving us the extended one instead. I learned a lot about spinal cord injury on that trip, and how quickly you could overheat and stroke out. I knew it in theory, but that was the only time it got real.”
Speaking of getting real, my friends have shown a willingness to help with almost anything — however personal it may be. A bathroom stall at a bar in Ensenada we visited on our annual cruise provided a perfect example. “You could get next to the toilet but couldn’t shut the door,” recalls Nel. “It was too dark to see, so I was either holding the flashlight so you could cath or helping you cath.”
For some types of friends, cathing might be too much to ask, but not for my girls. “It’s crazy, but I don’t mind, I love just being able to travel together,” says Nel. And having a friend willing to help you transfer on and off toilets and find your urethra in the dark certainly makes it easier to venture out of my comfort zone.
‘Right As Rain’
Every one of my friends has been privy to the ignorance and lack of access someone with a mobility impairment experiences. Whether they wanted to or not, they have all become experts in ADA accommodations and issues like bed height and roll-in showers. They’ve all shared in the frustrations of accessible parking and social ignorance, and they’ve also reaped some of the benefits: early entrance to events, better seats at a lower price because the cheap seats aren’t accessible, and people just giving us stuff because I’m in a chair. Together, we laugh it off as payment for the crap we put up with.
My friends have been with me through staph infections, a broken leg, keeping me cool on hot days at the Renaissance Faire by dousing me with water, and picking me up from restroom floors.
And true friendships are a two-way street. Just as my friends have always been ready to help me, I have sat with them through cancer, hysterectomies, an autoimmune diagnosis, and divorce. We have held hands and hearts, sharing the sorrows and joys that come from living. We have picked each other up emotionally, mentally, and, quite often, physically.
As the years go by, our lives change. Kids grow and priorities shift, but our friendship remains, and we grow and mature together. Our last wine-tasting adventure provides a perfect example.
“We found ourselves back in our hotel room at 6 p.m., each of us elbow deep in a can of Pringles, watching some mind-numbing TV show,” says Grace. “We were more the Golden Girls, and less Sex and the City, but we were together.”
Looking back on the first dance party that I attended, it’s hard not to escape the feeling that our group was meant to be.
Reminiscing, Erin told me not long ago, “As you danced with us in your wheelchair, leaving it all on the dance floor as we all do, it felt right as rain.”